“There are not many things in this life that make you want to change everything about yourself to become a better person, but having a child is one of them …. When Evelyn was born I remember looking at her and realizing ‘you are completely dependent on me, I will do everything to keep you safe’. Promising her that I would do everything in my power to protect her. She was perfect and I was so in love with her.”
Evelyn’s Father and Co-Advocate
It’s the same wherever you go. Two people meet and fall in love. Soon, the desire to have a family together will follow. There will most often be different backgrounds and upbringings involved and the circumstances for each person will vary. The differences do not matter though because there is something right about being together with this person that comes into your life. The result is a life spent together and that life will soon include having children. Sometimes, you can call a life together a small town story. Two people from a small town or city meet and they fall in love. Other times, the story of a life together involves two people from two different places a distance apart. Their paths crossed because they were meant to be together. That is through the good times and through those that are difficult. No one knows completely what the future holds as two people enter a union but there are things that are expected. Sometimes, events can take place that are so unexpected that they leave us overwhelmed. It’s these types of events and the circumstance that they create that this writer likes to bring to light. There are people out there passing you by on the street that have circumstances that most of us will never experience. Their stories need to be told. People need to be made aware. The story that I will soon get to involves a couple that met while each of them was serving in the United States Navy. This is of interest to me because this writer served in the same branch of our military.
In fact, I also met my wife while I was in the Navy. She was serving on the same navy base that I was at the time we met. I was from the south Bay Area in California and she was from Central Oregon. We first made contact with each other in the lounge area of the enlisted barracks at NAS New Orleans in Louisiana. She walked up to me and said hello. I acknowledged her and said hello back but I had no intention of going any further in getting to know her. Then on a certain day, she walked past me while I was just sitting there minding my own business. This time, she was dressed in such a way that she got my attention. This involved a certain pair of blue jeans that I will never forget. She had dressed that way intentionally, just for me. It worked and all of a sudden I was trapped. There would be no turning back. That was over 40 years ago now but I still remember that time in our lives. We had a blast together back then in those carefree days and thinking about them brings back fond memories. Our marriage would be followed by children, our first of which would be born while my wife Rosemarie was still enlisted. We never took the time to plan out our family. We just knew that we wanted one. Life would change a little with each child that was born. There was first Daniel and then Kenny our middle son but we weren’t quite done yet because we wanted one more. Two children would have been a great number but we were meant to have a son number three.
No one can know completely what the future will hold but there are things that can be expected. There are all of the life events that come our way and of course, there are bumps and bruises as we travel down life’s road. Hopefully, the struggles that we experience are ones that can be overcome. Sometimes, there are challenges that no one could see as a possibility. Several people that I have met have a person in their family that has special needs. For us, there was a history of people with special needs that ran in my wife’s side of the family. She had mentioned that it could be possible for us to have a special child, however I never gave it much thought. We had been lulled to sleep somewhat by the fact that our first two children were apparently normal and healthy as we planned to have one more. And then it happened. We were given a very special individual in our son Benjamin. Yes, there have been challenges along the way, both financially and otherwise, but we don’t carry a lot of regret. We knew that our lives had been changed as this person came into our midst almost 32 years ago but we feel that our lives had been made richer by the experience. We can say that we share certain things in common with everyone who has a child with special needs but there are some things in which our experiences cannot compare. Some become the parents of a child with special needs as they are thrust into the unexpected. What I mean is that sometimes, as two people meet, they have no knowledge that having a child with special needs is a possibility.
Even further from one’s thinking is the possibility that a child could be born with something like a rare disease that is fatal. These are children with a very rare kind of special needs. Completely unaware of what they will face as a family, the parents welcome into their presence a beautiful baby boy or girl. All of the normal things that are usually experienced come with great joy and expectation. Milestones are met as the cute things that tiny tots do are seen by the parents and those who are friends and extended family. There is nothing but great expectations as this child’s life shows so much promise at the onset. Things then change. This child that brought such joy now brings some special challenges. There are many things involved that are yet to come and still unknown about. At the beginning, there is something a little different that is seen in the child. A developmental issue or something in the child’s behavior is noticed and this brings concern. Soon, the issues are seen to be outside the normal range of things and a search for answers becomes something of the greatest importance. Perhaps the search includes answers as to why this child’s speech is not developing as it should be. What if in the course of the search for an answer, this child has a seizure. You’ve never witnessed one and you may not know what is being seen. It can bring a panic situation that has never been experienced. This is how things often begin for a parent of a child with something like Batten disease.
To me, these families and their stories are truly special because of that which is experienced and because of the type of love that is exhibited on a daily basis. It is a sacrificial type of love that reveals itself through emotions felt and through actions that are taken. That type of love is seen in this next story. Let’s not waste anymore time getting started. Like this writer and his wife had, Mike Jackson and Corrin Ricketson would meet while each of them was serving in the navy. The circumstances however, were a little different. Both of them had entered careers in the nuclear navy as Electrician’s Mates. The word mate is usually included in the title for many navy career fields onboard ships. How about some background information. For example, a Boatswain’s Mate would help steer a ship and perform other duties on the deck. A Machinist’s Mate would operate and maintain equipment. An Electrician’s Mate would be responsible for, among other things, electrical power generation systems. The level of knowledge and responsibility increases when we are talking about nuclear power on a naval vessel. The navy finds the best and brightest of individuals to fill these jobs as the training is technical in nature, to say the least. When you reach the level in the ranks that is considered a non-commissioned officer in the navy, you then are known as a Petty Officer. You first become a third class petty officer, then a second class, and then a first class petty officer. Many career minded people strive to become a chief petty officer which is an E-7 in the enlisted ranks. E-9 is at the top.
When you’ve made it to Chief, you’ve achieved something but that can be said for every level of petty officer. A first class is held in high regard because that rank is not easy to achieve. So with that in mind, let’s talk about Mike and Corrin and their meeting. Corrin had enlisted in the navy right out of high school but Mike had waited until he was 23 years old. They would meet while serving on the nuclear powered aircraft carrier named the USS Harry S Truman. They would both get to that ship in different parts of 2009. By the time they had met, Corrin had achieved the rank of first class petty officer (E-6). The carrier that they were stationed on had two nuclear reactors. Of the two of them, Corrin would become the Leading Petty Officer of the electrical plant for reactor number one. Mike would also achieve much during his time in the navy but at the time he and Corrin would meet, Mike was junior to Corrin in rank being a third class petty officer. Corrin remembers that she and Mike met while they were sitting at the tables in the galley during lunchtime. Both were with a mutual friend that Corrin had served with on a previous ship. Along with the other newer people on board in the Reactor Electrical Division, Corrin was trying to get to know Mike. She recalls that she thought Mike to be on the shy side but she wanted to get to know him as an LPO. This was for the purpose of deciding which reactor a particular person would serve at and Corrin wanted to speak with each of the new people. Mike, however, was not engaging in conversation and instead was looking down, leaving Corrin to wonder what was up with him.
The Crossing of Paths
Although she was a little confused over Mike’s quiet manner, she was certain of one thing. That is that she was attracted to Mike. Corrin recalls, “….he had his sleeves rolled up, and his tattoos were poking out. I remember thinking that he was really cute, and he should probably go to the other plant so I don’t stare at him all day long while we work, because it would be unprofessional.” And so it would be that Mike would wind up serving in the electrical plant for the opposite reactor that Corrin was attached to. Mike and Corrin’s paths would not cross again except during training and one port call. This took place in the country of Dubai while being deployed in 2010. She explained that it was at a local hangout for sailors that she helped Mike escape the “clingy fingers” of another female that had an interest in him. Apparently, Corrin was not the only one that thought Mike was attractive as she had intervened to break things up. Mike was appreciative of Corrin’s help and the seeds for a friendship were being planted. They had no idea at the time, but more than a friendship was in the process of developing. Feeling that she had achieved everything that there was for her to accomplish while serving, Corrin would leave the navy in December of 2010. The next step was to figure out what she wanted in her next career. She didn’t know what that was as 2011 rolled around, so Corrin decided to take a photography class in junior college. This would turn into an associates degree in photography a year and a half later and she would accomplish this using the 9/11 GI Bill.
Corrin had stayed in the general area where the Harry S Truman had been home ported and many of her friends were still active duty navy. It was still 2011, in February, when the Harry S Truman was out to sea on training exercises and Mike was still serving on board. Facebook popped up with a notification that she and Mike had friends in common and that she should friend him. Corrin did so and messaged Mike asking how things were going. While doing so, she did notice that his status showed that he was in relationship but she thought nothing of it. They did socialize a few times as the ship returned to port and their relationship would soon take a big step forward. Corrin explains, “One Friday night a bunch of us went to dinner at a restaurant. There were so many of us that the table was extremely long. So long I was texting the girls at the other end instead of shouting. I look over to Mike sitting next to me and he is under the table trying to hide that he is texting someone. I call him out for hiding his text when the rest of us are not being shy about it. So he holds his phone up for me to read and it’s a text to me asking if I wanted to hang out afterwards.” That was the moment that things would take a big step forward and Corrin explained that they were inseparable after that evening. There were many late nights spent together and they texted one another constantly when they were apart. By March, Mike and Corrin had become boyfriend and girlfriend.
They would find a house to rent together as they neared the end of 2011 since Corrin was living at Mike’s apartment most of the time anyway. Things were really taking shape but as the case can often be, the needs of the navy would put a demand on their relationship. This would happen during the Spring of 2012 with Mike expecting to come up for orders to a new duty station. He knew he would be going to the Naval Nuclear Power Training Unit in Ballston Spa, New York where he would serve as an instructor. This would present a dilemma as Corrin had started a new job at the Newport News Shipyard. Understandably, she would be unwilling to leave that position with where their relationship status was currently at. The Harry S Truman was in and out of port getting ready for deployment but would be home for 36 hours around the 4th of July and that would give Mike an opportunity to fix the situation. Mike asked Corrin out on a dinner date and insisted that they dress up for the occasion. Mike did what any sensible guy would do in this situation as Corrin explains, “He proposed that night at dinner. I was looking at something in the distance and turned back to find a ring box being held by Mike. He had a glimmer of a tear in his eyes when he asked me to marry him. I sat there blank for a moment, my brain yelling to close my mouth and tell him yes.” There were things running through Corrin’s mind as Mike had not yet transferred and with the ship getting ready to deploy. One concern was that he would not be able to come home if something happened to Corrin given their relationship status being single.
The other thought was that she would gain the addition of Mike’s military benefits if their status changed to being married prior to him leaving on deployment. Organizing an actual wedding in such a short period of time was not possible. Mike was from the state of Michigan and Corrin was from California and they were both living in Virginia. This would only complicate further any plans for a full scale wedding. All of these thoughts were running through Corrin’s mind as she posed the idea of elopement. One of the benefits of that would be a money savings that could be applied to an actual wedding at a later date. They didn’t know at the time but that event would never actually become a reality. Mike could only agree as all of this made great sense and of course, Corrin would say yes to Mike’s proposal! Corrin would go on to find a company that did elopements on the beach. The wedding included a photographer and the company allowed two guests as witnesses. The whole thing sounds very romantic. So it was on Tuesday, August the 14th of 2012 that Mike and Corrin would become man and wife. For the most part, the only ones that would know this was the United States Navy and a few close friends. They went out for Mexican food with some of those friends afterwards and it was back to work the next day. Family members would eventually put two and two together as they saw the wedding rings and not everyone would be happy. Sometimes though, you have to do what is necessary at the risk of not pleasing everyone.
Events would one day follow that would keep Mike and Corrin from having a larger wedding and honeymoon. Some of those events are yet to be talked about and as it would happen, the deployment for the Harry S Truman would be postponed the night before the ship was scheduled to leave. Mike would transfer to Ballston Spa, New York before the deployment happened and that is where Mike and Corrin’s story would continue. Mike would transfer in May of 2013 but he would go to New York alone at first. This was because Corrin had some work related business to take care of before she herself could transfer. They would start a family almost immediately but not one of the human variety. They first wanted to have some canine type kids. That was Mike’s idea actually. He had always wanted a dog growing up but his dad was allergic to them so Mike had to wait. Now was the time since he had relocated for shore duty and he and Corrin had plans to buy a house together. Mike would drive four hours to Vermont where he would pick up their first Australian Shepherd. Mike and Corrin’s new dog was a male and they would name him Skyler. With Corrin’s absence, the couple would Skype together in the evenings and those meetings would include Skyler. It would be later, in 2014, that Skyler would be joined in the family by a female Aussie Shepherd which they named Raine.
The next big event in Mike and Corrin’s story would take place during the months of July and August of 2014. That is when they would travel to Seattle, Washington to attend a wedding for one of Mike’s Buddies from the Navy. It was also at that time that they would go on an Alaskan cruise for their two year later honeymoon. This would give them the chance to preview the Seattle area. The Seattle weather was beautiful when compared to the frigid winter temps and afternoon thunderstorms in Ballston Spa. The area really caught Mike and Corrin’s eyes and it would one day lead to a move west. It would also be close this time that discussions about when to have children together would take place. Mike was ready. He recalled to me an experience that he longed for and it was prompted during an evening out with Corrin. Here is some of what he had to say, “We went out for dinner one night and sitting next to us was a family – a mom, dad and little girl who was maybe 4 years old. I was listening to some of their conversation and she was just adorable. I remember thinking to myself how I can't wait until I have a little kid like that and I can have these conversations with.” Corrin however, would have mixed feelings on the matter. She had been enjoying life as it was. She loved the nights out with her lady friends and her and Mike’s weekend adventures kayaking or riding in hot air balloons. All of this type of thing would come to an end if there was a baby involved. Even so, at some point, Corrin would want to be a mom. It was just a matter of when.
A Single Moment
Decisions can be impacted by events that happen within a single moment in our life. That is what had taken place one day as Mike and Corrin were out with the dogs at a park. It was on a day in October of 2014, when a pack of playful dogs ran right by Corrin. All of them missed her except the last one which ran into her right knee. She needed to see a doctor. Skylar and Raine were dropped off at the house as Mike took Corrin to the ER. Once there, they would find that her fibula patella was fractured. An MRI that was done the next day would show that her ACL was only stretched and so surgery would not be required. Corrin was put in a full leg brace and would be warned by the doctor, use caution in regards to gaining weight when pregnant. It was depressing for Corrin to watch the effect that the injury had on her leg with the atrophy of the muscles around the injury. Home on worker’s compensation for two months, Mike would offer to take her for a ride when he got home from work. I am sure that it wasn’t funny at the time but as Corrin put it, “…. like I was a dog, excited to see out the window at the big world.” This would certainly put any plans to start a family on hold until Corrin’s leg could bear the weight. Another factor would be that Corrin was due to make a job change a week after she returned to work. This was because she had accepted another position at the navy site she already worked at before her injury. She needed to work long enough to gain the twelve weeks of paid time off for maternity leave and this meant more waiting time before starting to have children.
Mike wasn’t too happy with this as he really wanted to start their family. Regardless of what either of their feelings were about the timing of a pregnancy, Corrin would soon find out that she was pregnant. Perhaps on a hunch, she decided to take a pregnancy test before a barbeque on Memorial Day weekend in 2015. The test result was positive. Corrin was due to have their first child and you just know that Mike was so happy to know this. He had been working rotating shift work at the NPTU (Naval Nuclear Power Training Unit) in Ballston spa and was ready for this next chapter in his and Corrin’s life together. That life would take on new meaning as parents and there was much that was looked forward to. In spite of Corrin’s injury to her knee, she would find that her pregnancy would be uncomplicated. There would be no symptoms of any kind, no morning sickness, and no weird cravings. The months would pass as they lived life with the expectation of welcoming baby number one. This would include the holiday season for 2015 as Corrin’s baby would be carried full term into the new year. So it would be on the 18th of January in 2016 that the big day would arrive. Corrin would go into labor in the early morning hours after her water had broken. Mike became anxious as he was given the news by Corrin, waking for work at around five in the morning. He started to pack frantically for the hospital but was reminded by Corrin that things didn’t work that way. With the lack of complications, they didn’t need to leave for the hospital until her contractions were less than five minutes apart.
With that in mind, they would wait what seemed like all day to go to the hospital. Mike said that it felt like the longest wait of his life. Finally, the contractions would become close enough to go to the hospital at around two in the afternoon. In fact, the contractions were so close together that they questioned whether they had waited too long. As Mike and Corrin got to the hospital and were registered, they pushed for her to have an epidural as Corrin was in a lot of pain. She would get that between five and six o’clock in the evening. Unfortunately, as Corrin received the epidural the contractions stopped and the waiting game would start back up. It would be another eight hours or so for Corrin to become dilated enough to start pushing and she would be given the drug named Pitocin in the process. This was in order to help get the contractions to increase because they were staying about five minutes apart. Finally, at about one-thirty in the morning on the 19th of January, Corrin could start pushing again. It would still take a couple hours for their baby to make its appearance but it would be worth the wait in the end. The event is something that most every couple looks forward to experiencing together. Mike and Corrin would get to say hello to their newborn baby girl at about 3:45 a.m. on the 19th of January in 2016. She was so perfect and she was perfectly beautiful. Mike and Corrin named her Evelyn Annalise Jackson. Baby Evelyn had all of her fingers and toes and she also had the most adorable little face.
The event would be life changing for both Mike and Corrin. They now had this little life that they were responsible for and much of their world would revolve around this child. Mike realized at that point that his daughter would be dependent on him for her protection. He would do anything in his power to provide that. This was his firstborn child and the experience for him and Corrin was like no other. Baby Evelyn was flawless and she was adored instantly by her mom and dad. At this point, Mike and Corrin had no reason to believe anything other than that Evelyn’s life held immeasurable promise. There were all of the normal events that were to be looked forward to as life continued. Mike and Corrin’s responsibilities revolved around helping Evelyn to experience life to the fullest as they guided her along the way. They were now a family. Just as would be the case with any newborn, there was the initial health screening that would take place and Evelyn was found to be healthy and whole. Even with the promise that was felt, Corrin did have some concerns that would stay in the back of her mind. One was that her father had a cousin with Autism and she thought that it might be part of the family genetics. One of the screenings that they had not been able to complete checked for the presence of such a thing. Named the nuchal translucency test, it measures the nuchal fold thickness. This is an area of tissue at the back of an unborn baby's neck. Measuring this thickness helps assess the risk for Down syndrome and other genetic problems in the baby.
Mike and Corrin also opted out of having genetic testing done. This would have checked for the presence of the 300 most common diseases in children. Prior to Evelyn’s birth, Corrin had experienced recurring nightmares that her baby was to be severely disabled. Even before the gender reveal party, she knew that the baby was to be a girl because that was always the gender of the baby in her dreams. Was this a sign of something that was to be part of their future? With the presence of such a perfect baby, one could only put these types of thoughts far away from their thinking. Corrin mentioned that this all may have just been the result of the nerves of a first time mom. Evelyn would pass her newborn screening and this led her parents to believe that everything would be okay with her. As a former Lead Petty Officer and an Electrician’s Mate in the nuclear navy, maintaining a nuclear reactor on an aircraft carrier was not a major challenge for Corrin. Neither were the positions that she held after leaving the service. However, in the hospital that first night and in the first few days at home, things were different. This brand new little baby girl was dependent on Corrin now and the experience was a little terrifying at first for her. Corrin explains, “I was excited to hold Evelyn, terrified to figure out nursing, and losing my mind trying to figure out how to get her to stay asleep .… I was so lost the first night in the hospital. She would not stay asleep. Was she afraid of the dark, should I keep the lights on some, does she need changing, because people say a wet diaper will wake a baby?”
Corrin continued, “By morning I was in tears, and asked for the nurses to take her so I could get a nap, I was failing as a mom. I walked by the nursery and there she was asleep, like how do they do it?” The challenge of figuring out nursing and being able to do it pain free was a major problem at first. Then there was the challenge of getting little Evelyn to sleep once they arrived home. She wouldn’t be able to sleep for more than 45 minutes at a time. This would be hard on mom as she herself needed to sleep. The struggles over nursing continued and most everyone that Corrin reached out to for help was unable to offer any. She was, however, able to call one friend in Virginia Beach that could offer some insights. It was a major ordeal for this new mom at first but she would figure things out in time. Corrin would have to because she wouldn’t be able to become part of the local mom tribe until her next child was born. Mike would take three weeks off from work when it was time for Corrin to return to her job. This lasted until daycare had a spot open for Evelyn. It was business as usual for Corrin as she returned to work. There weren’t a lot of emotions involved and pumping milk for her baby was not an issue. Life moved along for this family of three, just as it should. Evelyn would meet all of her milestones in the next 10 months. She sat up just like she should and she began to crawl right on schedule. Evelyn was her daddy’s baby girl and the pride of her mom and dad.
The Next Stage
The next big event for this family of three was Mike’s exit from the navy as his enlistment would end officially in August of 2016. Just as Corrin had during her enlistment, Mike achieved the rank of First Class Petty Officer or EMN1 (SW). In addition to achieving this rank, Mike also finished his bachelor’s degree in nuclear engineering technology. The combination of his navy training and experience along with his degree more than prepared him for the job market. It was unintentional that Mike would draw attention to his career skills prior to getting out of the navy but things would just happen that way. This took place as he was viewing positions that were mentioned on a Facebook page named Navy Nuke Job Finder. He responded to someone that had mentioned a position in Data Center Operations. There was interest in Mike for a position in Eastern Washington state, however Mike and Corrin were interested in moving to the Seattle area. After Mike gave a counter offer that included a request for a position in Seattle, he would accept a job at AWS (Amazon Web Services) as a data center infrastructure chief engineer. Their move west was on and moving to the Seattle area would take place in October of 2016. Mike and Corrin would take with them a beautiful little girl that was now ten months old. This family’s life together was now taking shape. The time that each of them had spent in the service had paid off. Mike had a position that provided for the family and they had moved to a place where they really desired to live. There were also no concerns that involved the needs of the navy. They could settle in and enjoy their new surroundings and a life spent together.
The future also looked bright for little miss Evelyn. She would develop normally even up to two years of age, meeting all of her milestones. Evelyn had started to walk at fourteen months and other than being a little small in size compared to other children her age, she was right on track. She said her first words right when she was supposed to and she would try many different kinds of foods. She wasn’t a picky eater. Other moms would remark about how smart Evelyn was while their kids were on playdates with her. They noticed that she loved to use her words. Corrin remembers that one of Evelyn’s favorite first phrases was “Read Please” and that they would do together. In addition, Evelyn and mom would work on puzzles and would do flashcards together. There were, of course, some minor challenges in Evelyn’s early development. Corrin would be reminded by friends and family that these were things that would straighten themselves out in time. Corrin remarked, “It took me forever to get her off the animal sounds when we did flashcards to actually telling me the name of the animal. She would jabber so fast I had no clue what she would say. But everyone kept reminding me it would come with time.” Evelyn was physically active just like her peers. She loved to run and jump, just like all the other little people her age. It would be around two years of age that Mike and Corrin noticed that things seemed to be a little off with Evelyn. Mike said that it was like her development had hit a brick wall.
He gave one example that I wanted to share, “She loved vanilla wafer cookies, I would always pull the box out and tell her I will give you as many as you want, you just have to tell me – she would always ask for two. I thought it was cute, but after months of this it was odd to me that her answer was always two.” Corrin gave another example that related to Evelyn’s diet. Whereas there had not been a limit as to the things Evelyn would eat, she started to refuse many foods, settling on just a few items. Corrin stated that Evelyn had developed faster than her peers in things like language skills. However, they would catch up and pass Evelyn in several areas. Whether or not to seek out help was a source of discussion with family members. Was Evelyn just developing at her own pace when it came to her speech or was there something to be concerned about? Corrin would get help from another person within the mom tribe. This mom would share her own experience in this area, even lending Corrin materials to use. It would be July of 2018 that Corrin would take Evelyn to the doctor to have her speech evaluated. She was then almost two and a half years old. The doctor would agree that Evelyn needed some help in this area. The end result would be that she would receive twenty therapy sessions, lasting from September until February of the following year. This would bring about some improvement. Corrin stated that Evelyn’s lack of skills in the area of her speech would also affect her behaviors. Evelyn would sometimes lash out because of the frustration of not being able to communicate effectively.
As the initial speech therapy sessions were completed, Evelyn would become eligible for more services through the school district. It was now March of 2019 and Evelyn would be evaluated using a combination of testing and information provided by Corrin. Much to her dismay, Corrin’s input would be ignored and disregarded leaving the school psychologist and other staff with only partial information. They would come to the conclusion that Evelyn’s behavior was just fine but that couldn’t be further from the truth at that time. Corrin stated that Evelyn had an episode just as she had left the car because she wasn’t allowed to bring a favorite DVD with her into the building. She had been crying, screaming, and thrashing out because of this. The four adults that were giving her all their attention during the evaluation had seen none of this behavior. To her parents, Evelyn’s behaviors and the addition of other delays was startling. For instance, there was potty training. Evelyn would have no problems initially with potty training but would stall in that area as well. She would never get to the point where she could do the entire task without assistance. Also, Evelyn couldn’t stay in regular underwear because of her inability to pull those and her pants up properly. Even so, Evelyn would stay potty trained, having only occasional accidents due to not reaching the toilet in time. She also would not reach the point that she could dress herself completely without assistance.
Things like hitting and pushing, throwing things and crying were commonplace. Shocking as it might be, she would even drop her pants when she didn’t want to walk anymore. Her behaviors were really starting to get out of hand and were becoming a major concern. Mike said that Evelyn would begin to develop sensory overload. How taxing would it be on a parent to have to deal with an issue like this? Mike explains, “Anytime we tried to go anywhere or do anything she would immediately begin crying hysterically. Over the course of the next 18 months it was really hard for me to want to go anywhere with her because I knew she was just going to scream and cry the entire time.” Mike would go on to talk about one night out with Evelyn after Corrin set up a father-daughter date (Evelyn was just a couple of months past her second birthday). In Mike’s own words, “…. This was the first real time we were going to go out and do something just daddy and daughter. I thought I would take her to the mall and we would ride some of the small children's rides and play some games, but as soon as we got there she had her usual meltdown. Despite this we tried to go in and I was hoping she would warm up to it, but she couldn’t handle it. She fought me to get on rides and kept asking for the car so we could leave. It made me feel terrible, like I was failing as a father.” How disheartening this type of thing would be for a person who was so fulfilled by being a father. Why was this type of thing occurring? Mike would look at other parents having daddy-daughter dates and he would wonder, why not him and Evelyn?
Mike shared that he couldn’t even get his daughter out of the car without her going into full meltdown mode. What a disappointment for a dad that loved his daughter so much. The meltdowns also took place when Evelyn was at the playground. This was a concern for sure because those meltdowns would involve other children. Whereas Evelyn once loved the playground, she would now be overwhelmed as soon as they left the house. She was so frustrated anytime they took her to the park that she would look for a child to hit right away. Disheartening is the word that Mike used to express how he felt as this was taking place. Corrin shared one incident that took place while at the park with Evelyn that still haunts her to this day, “At a playground she pushed a kid near a slide. Well, he fell towards an opening for a ladder, falling a good 10 feet to the ground. I was horrified, and mortified watching this mom examine her poor boy. All the while Evelyn didn’t get it. There was no remorse, no care …. she was just upset she couldn’t go play. I have never been back to that playground since. It terrifies me with PTSD.” As parents, this would leave Mike and Corrin bewildered and they felt as though they couldn’t take Evelyn anywhere. Could we even imagine? At around 3 years of age, Evelyn would begin preschool. In time, Mike would learn that the teachers were making no attempt to include Evelyn in the classroom activities but would instead leave her isolated. They would do things like feed her crackers and give her their phone to play with in order to keep her entertained. Of course this would be upsetting to find out about.
The Complete Family
The Jacksons had hoped that Evelyn’s issues would be ironed out and they had wanted to enlarge their family by one more. Corrin had been carrying their second child since Evelyn’s was about two and a half years of age and the time would soon arrive. Corrin would give birth to a boy and just as they had been the time before, they were pleased and excited. Welcoming their baby boy into the family, they named him Dominic Everett Jackson. Dad had loved his newborn daughter at first sight and now, he had a son. Corrin felt as though their family was complete and still, they had the challenges with Evelyn. Baby Dominic made his entrance into the family on April the 11th 0f 2019, being born in Renton, Washington. Life would continue and it would involve a mixture of feelings. There would be joy over the birth of their new baby boy but also, concern over the issues surrounding Evelyn. Getting her to eat her normal food was another challenge. Why were things that are so basic in life so difficult with her? Why was this perfectly beautiful little girl so unhappy? She would fuss over her food even to the point of having meltdowns. What was really disturbing is that she would eat dirt and sand anywhere it was available. It is normal for kids to eat a little as they are growing but not in the quantities that Evelyn was. Corrin recalled that it was in July of 2019 that they would take their first overnight trip with kids to a place named Ocean Shores. Evelyn would fuss and scream while they were out for Mexican food because her tablet was no longer connected to the WIFI in their room.
She wouldn’t touch her food. Corrin described the scene and to a few it may seem all too familiar, “She screamed at the food. Dominic was a cutie just sitting there at three months old. It was super embarrassing when an older couple came and said over Mike’s shoulder we get it, we’ve all been there. Afterwards we went to the beach to watch the sunset and Evelyn literally tasted every spot of sand. Like it was a freaking buffet.” Corrin went on to say that Evelyn just screamed for her tablet once she was done with the sand. Playing in the water like a normal toddler was of no interest to her. That was it! The entire thing flooded Corrin’s mind with thoughts about what might be taking place. She started to google some of the things that she was seeing in Evelyn on the drive home. Some that she mentioned were, “….delayed speech, repeating words over and over (echolalia), and obsessive interests in objects like the backpack or other stick objects.” Evelyn had started to carry a child’s backpack obsessively after her pacifier had been taken away. She would play with it non-stop, chewing on the straps. She would even get tangled in it as she attempted to carry it up and down stairs at the playground. There was also her short attention span and being disinterested or unaware of people who were around her. In the course of time, Mike and Corrin would have Evelyn tested for a variety of things. In August of 2019, Evelyn would be evaluated for her speech, feeding, and sensory issues.
An occupational therapist is not someone that you might normally think to be involved with childhood health issues but their input is valuable. They have the ability to assess developmental skills as well as vision, strength, and neurologic function. Things like fine motor, visual motor, and gross motor skills are looked at when a child is seen by an OT. A standardized assessment might also be completed. Corrin shared what one therapist had said to her, “The therapist said she probably has sensory overloads. Thus her need to scream, howl, and to be loud, to hit things, to jump, swing, and to taste things for sensory input. It made sense. I thought I was getting somewhere and I could help Evelyn.” Sensory processing disorder was something that was treatable and Evelyn certainly fit into this category. Evelyn would also be tested for a disorder called Pica. This is a disorder in which people compulsively eat things that have no nutritional value. Evelyn’s desire to eat large amounts of sand and dirt would lead people to think this to be a possibility. Pica can occur in children with intellectual disabilities. It seemed like almost everything that Evelyn was evaluated for resulted in a positive diagnosis. Her results for Pica though, had come back normal. Another possibility was the presence of ADHD. Corrin had mentioned to Mike that she felt that autism could be a possibility. This as Evelyn had been showing some of the symptoms of that disorder. It was a confusing time though as friends would share the experiences they had with their own children.
Their friends felt that they themselves had gone through similar things with their kids and that children just develop at their own pace. Mike said that he had been reinforcing to himself the feeling that everything would work itself out with Evelyn. Things were going to “click”. As time went on though, he began to concur that autism was a strong possibility. Evelyn would get put on a waiting list to be tested for autism. The wait however, was a year long. Could they wait an entire year? The presence of Evelyn’s little brother Dominic had created other issues that were difficult to deal with. Dominic had just been busy being the baby of the family but Evelyn was not happy about the shared attention that was now required. She had been okay with things when Mike had been at home but not after he had returned to work. Corrin explained some of what was experienced, “….when it was just the three of us, and I was trying to nurse Dominic on the couch and had cartoons on for Evie, it wasn’t enough. She would pick on the dogs, throw things around, knowing I was stuck with a newborn on me. People would tell me to put the dogs in another room, but Evelyn would howl until our male dog would chime in at his high pitched tone.” Two children would be twice the work for sure but Evelyn’s behavior was making things much more challenging than that. Corrin stated that she would be in tears most days, not always knowing what to do. She could only believe that this wouldn’t last forever and that she must endure no matter how difficult. Even so, Corrin must have been conflicted in her feelings for her daughter. There was no manual that came with Evelyn that gave instructions for dealing with such extreme behaviors. There would be days when she was difficult to love because of the way that she acted out for no apparent reason. Why was she so troubled at such a young age?
Another difficult challenge had to do with how Evelyn’s behaviors were affecting friendships with other families. It was also difficult any time she was out in public settings. Corrin gave some examples, “Friends stopped inviting us over because Evelyn would destroy their house, taking all toys and books off shelves, throwing legos everywhere. Just no impulse control. I was grocery shopping once when Evelyn saw a bag of goldfish on a shelf and I told her no. So the tantrum and the screaming started. I had employees asking if we were okay, checking on us as I went to a different aisle.” Corrin must have felt like she was under the microscope because Evelyn would act out while on public outings. She would draw unwanted attention to herself and those that were with her. Corrin continued with these words, “I hated shopping with her, always screaming. I’d bring toys and food to keep her occupied until those became a throwing object. I took Evelyn to a harvest festival. It was the second year that she and I went to it, this time with Dominic in tow. She freaked out. The noise of the motorcycle stunt show, the crowds, she couldn’t take it.” Corrin added, “She was like a ticking time bomb. Some days were good and others were meltdown city.” Children are generally happy campers. Certainly, there are times when there is a bit of naughty behavior but there is usually a general innocence that is present in kids. Why was Evelyn having such a hard time at a time when life should be so simple and fun?
Evelyn was a complicated child for sure. Autism could very well be her diagnosis but placing her in that category would be a long process. One thing was for certain. That was that this little person was making life difficult. She was definitely worth going through the challenges but the way that she complicated everything was taxing on the emotions. Her issues not only affected her parents but they also extended to family friendships and relationships with other family members. Things would get worse. An event would take place on August the 30th of 2019 that would shake both Mike and Corrin. It would raise the level of difficulty to an even higher level. I thought that I would let Mike explain in his words as we continue with the story, “It was a Friday afternoon sometime around lunchtime. I was not very busy that day and was sitting around with some of the guys talking. Corrin called my phone, which seemed weird to me, because we always just texted each other throughout the day. Before I answered it, I half-jokingly thought to myself ‘great, something must be wrong’. Corrin was taking Evelyn to the fair to meet up with some of their friends. When I answered the phone Corrin was hysterical, and she told me Evelyn was having a seizure. They were on their way to the fair when Corrin saw Evelyn in the rear view mirror with her eyes rolled back convulsing. Neither one of us had ever dealt with anything like this before, and I didn’t know what to say, I felt helpless and so far from anywhere I could help.”
How Things Can Change
Corrin had made her way to an open parking spot in an overflow parking lot where she had proceeded to call 911. This happened as Mike stayed with her on speaker phone. She had actually not known at that point what was taking place with her daughter as Corrin had never witnessed a seizure before. Evelyn had returned to normal and had fallen back to sleep after the seizure. How frightening this had to have been. It had resulted in a state of panic on Corrin’s part, even as she did her best to deal with the situation. An ambulance would arrive and would put little Evelyn on their bed so that she could be transported. Evelyn had been slightly awake with her face drooping and her speech slurred more than normal. One could only imagine the level of concern over this little princess of a girl. So much had happened prior to this date and now this! Mike had gotten in his car and headed south as he worked in the Seattle area. He had been on the road for about twenty minutes when he learned that Evelyn would be taken to Mary Bridge Children’s hospital. Finding out where they had taken Evelyn to at the hospital was another panic situation. This was as Corrin had followed the ambulance and arrived, placing Dominic in his stroller. Evelyn seemed to be okay as Corrin had made it to her room, she just wanted to be held. Evelyn had experienced a grand mal seizure and this is how Mike and Corrin would be introduced into the next step in their search for answers.
Evelyn’s situation would stabilize and they would be discharged with no updates and no answers as to what had caused the seizure. Her discharge papers did say that a follow-up appointment with a neurologist would need to take place. Corrin stated that they would spend the next four days on edge, watching Evelyn, sleeping with her, and listening to her breathing. So much had taken place with Evelyn as her parents had tried to piece together the puzzle that surrounded their daughter’s health. It wouldn’t take an extremely long time for them to get some answers and the process would begin with a meet and greet between Evelyn and the neurologist. Mike stated that they had brought all of Evelyn’s developmental issues to the neurologist's attention at the initial meeting. He would take notice of what was shared. Perhaps he suspected that more was taking place than just a seizure disorder. Corrin gave some additional details about what was shared with the doctor, “I remember trying to describe the grand mal, trying to remember details I couldn’t, like what were her legs doing. They were crossed. I remember not being able to move them to unbuckle her. I told him about our recent therapy evaluation with their diagnosis of sensory processing disorder, and speech delays. His eyes widened with those details and her eyes moving to the right of her head.” As is usually the case, Evelyn would be started on the medication known as Keppra for controlling future seizures. Both Corrin and the neurologist felt that there was a connection between the seizure and Evelyn’s developmental issues.
Mike said that he had yet to consider a worst case scenario and he just kept reassuring himself that they would get things figured out. Initially, the doctor wanted an EEG scheduled by Mike and Corrin and he asked them to contact the scheduling department. Much to their dissatisfaction, Evelyn was given an appointment for three weeks later. Once contacted, the neurologist would find this to be completely unsatisfactory and he would step in. The result would be that Evelyn was scheduled for her EEG a couple of days later on Friday. That day was September the 6th of 2019. Corrin had tried to arrange for a friend to watch Dominic but the appointment would come too quickly for that to happen. Mike would instead accompany Evelyn while Corrin remained with Dominic in his stroller outside of the room. The day would turn out to be one filled with trauma. Evelyn would need to be sleep deprived in order to undergo the EEG, so she would be kept up late and woken early. You can only imagine that a sleep deprived child would struggle during this type of a test. Many would struggle with an ample amount of sleep but even more so while being tired. As Evelyn’s father, Mike would have to do what was needed to make sure that the test could be performed. This would be under very trying circumstances. He explained, “Evelyn was tired, scared, and hysterical. She was thrashing around to get away while they tried to install the leads on her head so I had to restrain her. I pinned her down and put my forearm against her head to keep her still and she fought me with the entirety of her being. For the next thirty minutes or so we had to do this, and I will never forget the way she was looking at me. It was as if to say ‘why are you doing this to me.’”
Corrin had been left outside the room with Dominic because of the requirements at the facility. She was left outside, listening to all the noise of the disturbance taking place within. Which situation was more difficult to bear? Standing firm because he had to, Mike may have felt as though he was betraying Evelyn’s trust in him. This however, was something that he had to do. The test needed to be performed and he had to focus on the “task at hand”. Evelyn would fall fast asleep almost immediately after being hooked up to the test equipment and Mike would lay next to her on the bed. A traumatic chain of events had taken place and they had brought this father and his daughter to this point. Mike explained what he was feeling, “Now that things had finally calmed down for a moment I finally had a chance to process what just happened and I immediately broke down crying. That was, and to this day still is, maybe the most traumatic moment of my life. I looked at Evelyn with all these wires hooked up to her, I was thinking about her seizure and all of her developmental issues and was hit by a ton of bricks”. Mike was left to wonder what it was that was taking place with his baby girl. He added, “I was literally living out the worst moment of my life.” To those that have read other accounts like this one, the things that had taken place may all seem just like a matter of fact. It was different for Mike and Corrin as they went through it. They had both been involved in a line of work that required calm under pressure but this was an entirely different type of a situation.
This was their first born child. A most beautiful little girl that was much loved. This was even with all the issues that had occurred with her development problems. There was something terribly wrong going on. The test ended and the technician wanted to make certain that a follow-up appointment with the neurologist would get scheduled. She had seen a lot of very abnormal activity during Evelyn’s EEG and her concern was noticeable. Mike asked about the possibility of epilepsy to which the technician’s reply was yes. Her response however was such that it would lead Mike to think that something much more serious was taking place with Evelyn. He was still filled with emotion as the technician went back over everything with Corrin present. It was impossible for Mike to keep himself composed. Being a sensitive dad, the events of the day were just overwhelming for him. The follow-up appointment with the neurologist would take place on the 9th of September in 2019. The diagnosis for Evelyn at this point was simple epilepsy and this would be a treatable condition. Corrin had been thinking about how their lives would change and their activities as a family would have to be altered. No more long day drives, no amusement park rides, and no swimming. Those were some of the things that Evelyn enjoyed and Corrin feared that those kinds of things were no longer possible with a diagnosis of epilepsy. She had no idea that something much more involved was about to be revealed.
Once at the appointment, the neurologist would share that Evelyn would qualify for a type of testing called Behind the Seizure. It was made available by a well known company named Invitae. This was, no doubt, made available for Evelyn because of what was seen during the EEG. It was very possible that there was more than simple epilepsy at play given the “abnormal results” of the test and Evelyn’s history during her development. Mike and Corrin would agree to the genetic testing even though this would mean that Evelyn would be subject to more discomfort. Her blood would have to be drawn after she had already been put through so much with the EEG. Mike said that they made sure to shower her with love and attention plus she received things like candy treats and time on her tablet. It would take several weeks for Mike and Corrin to receive the results of the genetic testing and in the meantime, Evelyn would undergo an MRI. This would take place on the 15th of October with a follow-up appointment happening a couple of days later. The results of that testing came back with no additional issues being revealed. Evelyn had been prescribed Keppra for control of seizures and the drug was working well enough. For Mike at least, it was life as usual with the long wait for the results of the genetic testing. He had gotten used to the belief that Evelyn was an epileptic with sensory issues and potentially, had autism. He was not prepared for what would be found out through further testing.
News Not Welcomed
It would be almost two months later that Mike and Corrin would hear back from the genetics team. The results of the genetic testing were in and they would meet with the team on October the 30th of 2019. Nobody could be fully prepared for what would take place. The Jacksons were brought into a private room that had just a few chairs and a mat on the ground for kids. Mike stated that the team introduced themselves and then proceeded to ask questions about each of their family bloodlines. Some of the questions were ones that Mike found to be slightly offensive but both him and Corrin answered them nonetheless. They actually wanted to know if Mike and Corrin were related in any way. Mike said that they began mapping out a family tree and this left him confused as to what this was all about. Mike did an excellent job of explaining what the doctors suspected while stating what the testing revealed. Here is what he said to me, “… the doctor got very stern and said the results of the genetic test showed that Evelyn had mutations on her CLN2 gene. This gene is responsible for producing an enzyme that breaks down cellular waste called lipofuscin. The name of the enzyme is TPP1 (Tripeptidyl Peptidase 1). This is a lysosomal storage disorder known as Neuronal Ceroid Lipofuscinosis, more specifically CLN2 Batten disease.” The doctor also shared that there was a treatment available for CLN2, however, it was not available in the state of Washington.
It was hoped that Evelyn had something like epilepsy along with sensory processing disorder prior to the meeting. These were things that the Jackson family could live with. The doctor made it very clear that what they were actually facing was something much more serious. The next step would be to do another blood test. This time, they would measure Evelyn’s TPP1 levels to make absolutely certain that she had CLN2 Batten disease. It was difficult for Mike and Corrin to fully grasp what it was that they were facing at this point. The genetics team would furnish them with a phone number for if they had any more questions, however, it wouldn’t take long for them to learn more. There in the lobby at Mary Bridge hospital Mike would Google CLN2 and he would learn things that would bring great dismay and disbelief to any parent. His search revealed that CLN2 is fatal and any child having it generally dies between the ages of six and eight. Mike looked at the symptoms of the disease. He could put a check mark in an imaginary box that was next to each one of them. All of a sudden, and sadly so, they now had what would be a root cause for all of Evelyn’s developmental issues. The puzzle that they had tried to piece together during the last twenty months may have now been solved. The thought that his daughter had this disease caused Mike to break down once again. This family of his was his reason for going to work each day. This little girl was his firstborn child and an adorable little person at that. In Mike’s own words, “Every time I left this hospital, it seemed like I was leaving a piece of myself behind.”
The Jacksons would once again find themselves in the lab prior to leaving the hospital. They had to have the blood draw done to determine what Evelyn’s TPP1 level was. Lost in the thought of what they may be facing, each handled the stress in their own way. Corrin explained, “…. Mike was withdrawn into himself, so as we waited what felt like years in the blood draw lab, I just read the stupid kid joke posters on the walls, chuckling to myself and trying to show Evelyn the animals. I couldn’t stop myself. I now realize that in stressful situations I start to joke and create humor in order to lighten the mood.” It would be back to the waiting game and again, Mike and Corrin tried to go about their business. They would attend a Halloween dinner on the 31st and would keep everything to themselves. Corrin shared what had taken place so far with a friend that was a nurse and she looked up Batten disease. Her nurse friend would assure her, there was no way that Evelyn could have this disease. If only that was found to be the truth. On November the 1st of 2019, on a Friday, the genetics department called to inform Corrin that Evelyn’s TPP1 level was zero. Her body was not producing the enzyme that it needed to break down the wastes in its cells. That was the culprit that had been causing the issues with this little beauty of a girl. Evelyn had CLN2 Batten disease. The only positive in the situation was perhaps the fact that she was diagnosed fairly quickly. She was diagnosed just two months after her first seizure.
In the course of time, little brother Dominic would need to be tested. This was because the chances that he also could have Batten were one in four. Again there would be more waiting. The thought that Dominic had these same challenges ahead of him were too difficult to consider. Mercifully, Dominic’s results would come back showing that his TPP1 levels were normal. Many times, families will be given the news that more than one of their children has Batten disease. Mike and Corrin would be spared from that as they received good news. It had already been shared with Mike and Corrin that there was a treatment available for CLN2 Batten disease. The earlier a child is diagnosed, the better. That is because there is less damage that takes place before treatment is started. Getting Evelyn started on the treatment as quickly as possible was essential. The treatment involved a child receiving something called Enzyme Replacement Therapy. A solution named Brineura takes the place of the missing enzyme and it is received into the brain through a port that is surgically implanted in the child’s head. Evelyn would need to have this surgery done right away. As was stated however, the treatment was not yet available in Washington state. The Jacksons had to take things one step at a time though and there was a neurosurgeon available at Mary Bridge hospital that could implant the port. They would meet with the surgeon on the 4th of November and he would find that everything looked good to proceed with the procedure.
The thought of their little preschool daughter having brain surgery was not something that Mike and Corrin could wrap their heads around. They just knew that the surgery was something that had to be done. It would only be a matter of a couple of days that Evelyn would be scheduled to have the procedure performed. It would have been impossible for either of Evelyn’s parents to handle things on their own and Mike would be quick to let his boss know what was taking place. In response, Mike was graciously allowed to work virtually from home as he and Corrin worked through the details of what they were facing. This all had to seem like a whirlwind of events that was taking place and the thought of having to travel for the treatments had to be mind numbing. Mike and Corrin had been told that Children’s Hospital of Orange County in California was an outstanding place for treatment. They were also told that Evelyn had been accepted there. Later in the day however, they received a call stating that CHOC had declined to accept Evelyn in as a patient. There were other places in the western United States that she could go for treatment and the genetics team was looking into other possibilities. As would be the case though, the genetics team would contact the Jacksons the next day. Evelyn would be accepted at CHOC after all, however a surgeon there would need to do the port placement surgery. Mike stated that this was disheartening because he knew there was a two week recovery time after the surgery. This would all have to happen in Southern California.
The actions of parents after their child is diagnosed with CLN2 Batten can often be seen as sacrificial. They will travel any distance, move to a different state, and even change countries in order for their child to receive enzyme replacement therapy. The welfare of their child is placed above all else as a matter of importance. Mike and Corrin would also do what was necessary and that would mean traveling down to Orange County California as a family by plane. A doctor from the genetics team at CHOC would contact Corrin to go over the details of the process and answer any questions that she might have. Aside from all of the questions surrounding Evelyn’s surgery and treatment were the concerns about leaving home for three weeks. It’s not easy to just pick up and leave your home for that length of time, especially with two dogs in the house. Someone would have to care for the canine members of the family while they were gone and Evelyn’s school and therapies would have to be notified. Corrin was dreading all of this and rightfully so but they would work things out because Evelyn needed them to. It would be a big push to tie up all the loose ends before they left and it would have to happen in a hurry. It would be November the 13th of 2019 that the Jackson family would all fly down to California and arrangements had been made for all of them to stay at the Ronald McDonald house. Mike and Corrin would meet with the genetics team and the neurosurgeon as soon as possible to discuss what was about to take place.
A Life Not Expected
This was one of the leading teams in the nation for treating CLN2 Batten and the Jacksons would become comfortable with them immediately. The surgery to have Evelyn’s port implanted would take place a couple of days later on November the 15th. The procedure would be performed early, at five in the morning. Mike was allowed to be by Evelyn’s side as soon as she got out of surgery. He shared that she was only semi-conscious at that time but visibly in pain and not completely comfortable. Evelyn was calmed as Mike climbed into her bed and held her securely. This would help her to fall asleep and rest as she was transported to her room. Mike was a capable and athletic individual being an Ironman Triathlon competitor in his spare time. Even so, he was a sensitive guy when it came to his family. He had been shaken as Evelyn had undergone her EEG and all the subsequent testing but he had adjusted his emotions over time. Mike explains, “Seeing my baby girl like this was hard, but I was much more prepared for what was happening this time (vice the EEG). I was more accepting of the fact that at this point we do what has to be done, and I need to emotionally disconnect myself from the situation.” Evelyn would wake a couple of hours after the procedure was completed asking for her tablet. She was content, playing with it as she drifted in and out of sleep during her recovery that day. Evelyn showed that she was a resilient child. She was amazing to watch as she bounced back almost completely to normal the following day.
There would now be a two week recovery period and that would be a trying time for Mike and Corrin. This was because they would have to sit and wait for Evelyn’s recovery to be completed. There were a few follow-up appointments to attend but not a lot more than that. The Jacksons were stuck at the Ronald McDonald House with two small children and the place was not exactly kid proof. This would not be a relaxing time but rather a stressful one as Evelyn and Dominic had to be watched constantly. Mike referred to the time leading up to Evelyn’s first infusion as “nerve wrecking”. There would however, be a feeling of relief for mom and dad once Evelyn’s port was accessed for the first time. Her first infusion would take place on the 1st of December in 2019. This was exactly one month following her diagnosis and three months after her first seizure. That is amazing! It was required that Evelyn stay at CHOC for observation following the first four infusions for a 24 hour period. That meant that they would have to stay an additional day after the first infusion. You can only imagine how relieved Mike and Corrin were to get on the airplane that would take them home to Washington. This was even though they knew that the trips to CHOC would have to continue. There was no way that they could continue to go as a family so Mike would accompany Evelyn for the next two months. In the meantime, the company that produces Brineura, Biomarin, would be working with Mary Bridge hospital in Washington. The program for the infusions would need to be set up so that Evelyn could be taken there instead.
This meant another flight to and from Southern California for Mike and Evelyn every two weeks. This was difficult to say the least. Mike explains, “I was balancing work with getting Evelyn down to her infusions and it was soul draining. Every time we had an infusion I came back a little more dead inside. You can see pictures of me through this process as I’m smiling at first to just an exhausted mess by the end.” Not only was this wearing Mike down but the cost was draining on their finances. There had been a gofundme account that had been set up for the Jacksons at one point. They had originally been hesitant to accept this kind of help but it would turn out to be a life saver in terms of affordability. Mike and Corrin would be understandably happy and relieved once the program was set up at Mary Bridge. It would only be a thirty minute drive after that to get Evelyn to her infusions. The Jackson family would now be able to settle into the new normal that would become their life. Noticeable to the two of them was the shift of people that would be a part of their life. Friends and extended family who they thought they were close with would either disappear or communicate with them only on occasion. Eye opening to Mike and Corrin were the people who were instead willing to do anything that they could. Mike added this, “On the other end of that spectrum there are people we weren’t close to at all or hadn’t spoken to in several years who were willing to do anything they could to help.” Life would become a whirlwind of commitments once they returned from CHOC in Southern California.
There were doctor appointments and therapy sessions plus drop-offs and pick-ups to and from schools. This is not to mention caring for a house and two pets. There was also Mike’s continuing work schedule. It was at this time that so many people would shine as they provided help to the Jackson family. Whether it was gift cards for groceries or cooked meals, the help was so appreciated. It might come from members of a mom’s group, family friends, or old Navy buddies. Everyone who cared to help stepped up and did so in a big way. The Jacksons would also discover a great source of help through social media. Mike would search for groups and individuals on Facebook within the Batten community and he would share these contacts with Corrin. Kayla Neveri, as an example, is a Batten mom with a special CLN2 princess named Breanna. She shared some difficult but necessary truths about Batten disease with Corrin while they chatted on-line. There were so many that responded in the private Batten Family group when Corrin shared her initial frustrations after Evelyn’s diagnosis. Knowing that you are not alone as a family begins this journey …. it is invaluable to surviving the initial shock that comes with finding out the truth. Suzette James is a mom whose beautiful daughter Maya battles atypical CLN2 Batten. They are a southern California family who was able to take the Jacksons under their wings while they were at CHOC. That help was greatly appreciated. Mike would also create a FB page called Evelyn’s Battle with Batten. This, in order to keep friends and family informed about everything.
Evelyn would receive a new neurologist right after her diagnosis of Batten disease. This doctor was to oversee Evelyn’s Batten case and she would be the lead in overseeing Evelyn’s infusions. Mike and Corrin would be a little apprehensive over this at first. That is because she had graduated from medical school not that long before taking over Evelyn’s case. What the Jacksons would soon find out though is that Evelyn’s new neurologist was, in Mike’s own words, very responsive and open to integrating new ideas into Evelyn’s care plan. Along the same lines, she listens to the Jacksons' concerns and she works well with the other members of Evelyn’s care team. I am certain that Mike and Corrin’s love for Evelyn was clearly seen by all of the medical staff at Mary Bridge. Corrin’s love for her daughter would also be demonstrated through her actions. This, as she wanted to do her very best at getting her daughter what she needed in the way of help. Treating Evelyn’s Batten disease symptoms was of the highest priority but she also needed help with her behavioral issues. Corrin was completely in when it came to researching and finding therapies that would help Evelyn to improve in this area. In addition to Batten disease, the neurologist would be able to diagnose Evelyn with autism and also ADHD. This would lead to the opportunity to have Evelyn involved in something called Applied Behavioral Analysis Therapy. There was much that would need to take place for Evelyn to qualify. That would include an in-home meeting with the ABA lead and her assistant.
Help for Evelyn
They wanted to talk in person with Corrin and meet Evelyn at the same time. This was to help evaluate Evelyn’s need for the program. Were her behaviors serious enough to warrant involvement in ABA? Both ABA staffers would find out quickly enough that they in fact were. Corrin described the scene during the meeting, “Oh man, did Evelyn let the true Evelyn out. Throwing, screaming, and hitting Dominic and the dogs. She was climbing on chairs, doing things I’ve never seen her do to get my attention away from these ladies. The lead could see the look of defeat on my face. The tired, given up, no life left in my face look.” Evelyn would be accepted into the program and would start attending it full-time in February of 2020. As would be expected, Evelyn would get off to a rough start but they would see some gains in the near future. She would stay involved with ABA for 18 months and many of her issues would be stopped or minimized. In addition, Evelyn would continue to go to school on-line during Covid and began to go to school in person in September of 2021. Corrin would also seek to have Evelyn involved in what is called hippotherapy. This involves the use of horses as a form of therapy. In this the horses movements are purposely manipulated in order to engage the child’s sensory, neuromotor, and cognitive systems. You can only imagine that this would be a very useful form of therapy for a child battling Batten disease. Not only is this a great thing for Evelyn to be involved in but it also feels like a normal type of activity to Corrin as she grew up riding horses herself. It’s important to keep a Batten child’s life as normal as one can.
There is a normal type of an experience that a young couple would expect when they set out to have a family together. Certainly, there will always be challenges and occasional hardships that has to be dealt with. We always take difficult circumstances one event at a time. We deal with each struggle and then we move on. For the most part as parents, we focus on the things that are expected. There are life events and milestones in each of our children’s lives that we look forward to. Seeing our kids reaching goals and finding success in life are what we look forward to. We normally experience all of this while finding satisfaction in our work and in the pursuit of other interests. Together as a family, we experience life events such as graduations at the different levels, weddings, and other family gatherings. Those are the experiences that we think about when we first start out. Life is different when it involves caring for someone with special needs. The demands are different and they seem never ending. Oftentimes in regards to children with special needs, parents are thrust into a care-giving role that they did not expect. They had expected to go through a normal cycle of life as a parent but things soon change with a diagnosis that brings demands not seen. It is normal these days for a mom to carry on with a career once her children reach the age for that to be possible. Being placed into a caregiver role without a choice is something that Corrin often struggles with. Her adult life had begun in a career that carried with it a lot of responsibility.
She had the intellect and the desire to continue with a career of her own once the kids were of age for that to happen. Life is different for her now. Corrin speaks to this, “I wanted to go back to college once the kids were both in school but what’s the point now if I can never apply the degree to something. Like all Batten moms, my role revolves around Evelyn. Medicine required in the morning, never can I sleep in unless it’s a weekend and Mike is up early giving it.” The regiment for giving medications to a Batten child would be mind blowing to most and that need is always changing. There are also all of the other demands. Getting Evelyn to therapies and doctors appointments plus making constant phone calls related to her ever expanding needs. There are stresses related to her food intake and physical activities that she needs to be involved in for flexibility and muscle health. There are IEP meetings and staying on top of the goals that are set. The supplies that need to be carried at Corrin’s side or in her vehicle are also changing and expanding. Things like rescue meds for seizures and gtube supplies. Corrin always has to stay within a short distance of Evelyn’s school in case something goes wrong. This is just a partial list of what is required but I think you have the idea. Add to this all of the normal responsibilities of a mom caring for two small children. Think about all of this for a moment. There is also the responsibility of keeping on top of new research that is taking place and helping to make sure that memories are captured for a lifetime.
Corrin adds to what has already been stated, “As a mom you know that all of the baby toddler things you have to help your child with they will start to do on their own, but not a Batten kid. They are basically stuck in toddler-hood forever, always needing you. Somedays I hate it, hate this life, then the guilt sets in because she didn’t choose to have mutated genes from her parents to make her life this helpless. I’m in a constant roller coaster of hating our lives, hating Batten disease and what’s to come.” Corrin does a great job of keeping things real when sharing what her feelings are. Make no mistake concerning Corrin’s love for her daughter though. She would give up her own life for Evelyn’s if required but it hasn’t been easy. There were times that she hated Evelyn’s behaviors and the way that they as a family were perceived by other people. This is because of what had occurred at places like the playground and grocery store. Brother Dominic is now of the age that the normal sibling rivalry between him and Evelyn is occurring. Mix into that squealing kids and howling dogs. Sensory overload can be a factor in Corrin’s day and life can be overwhelming at times. She always has to be on the watch for seizures with Evelyn. Driving in the car with Evelyn seated in the back and in her rear view mirror brings flashbacks of the day that she experienced her first grand mal seizure. There are other times that she sees the real thing taking place, only this time she is witnessing a focal or absence seizure. This would leave any mom feeling on edge.
To Mike, Evelyn’s disease is not a small deal. Rather, it is something that consumes his thinking. He says as much with this, “The knowledge of Evelyn’s disease is always weighing on me …. ALWAYS. I think about it every minute of every day. I have learned to live with it, but it’s like a weight, a sadness that sits heavy on my chest. It’s always there.” There are certain difficulties that come as a result of having a child with special needs. One of the challenges that comes with Evelyn is that she can never be left alone but rather, she needs constant supervision. Either Mike or Corrin have to keep an eye on her at all times. Mike added, “She’s like Mr. Magoo, constantly wandering around with no concept of things around her that could hurt her. Things like stairs for example. We very rarely have the ability to go out just me and Corrin because people don’t want to babysit Evelyn.” Mike understands other people’s feelings concerning things like handling Evelyn’s seizures but it’s still challenging mentally. It is rare that Mike and Corrin are able to go out together on their own. Just like Corrin, and as people would expect, Mike had never heard of Batten disease before Evelyn’s diagnosis. Mike uses the term “soul-crushing” to describe his response as he read about Batten disease for the first time. It still is that to this day. Look at Evelyn and you will see a most beautiful little girl. She is the object of her father’s love and adoration. I’ve said it so often in the past but it’s worth repeating. This kind of thing should not happen to children. They should be left to experience joy and innocent fun as life’s lessons are learned.
The New Normal
Mike thinks back to the time before Evelyn was born. He and Corrin had been out to dinner one night after they had moved to upstate New York. He had observed a little girl that was having a conversion with her mom and dad while at their table. Mike listened in and found the little girl to be just adorable. He had to have felt fortunate to have a baby girl when Evelyn was born. Now he and Corrin would have similar opportunities with their daughter. Their situation however, would turn out to be very different. They would find themselves in a rare set of circumstances that are not experienced by many. There have been a lot of difficulties as they have raised Evelyn, who is now six. Heartache is felt over what they face as a family but there is a love for Evelyn that is undying. There is nothing that they wouldn’t do to help their daughter experience life to the fullest. Mike feels that his experience with Evelyn has battle hardened him. He is better now at putting his feelings to the side while doing what is necessary for his children. He is also more empathetic towards other people. Mike knows that there could be other people with a similar weight on their shoulders as he comes in contact with others. You never know what another person may be experiencing. There are so many questions that Mike has concerning Evelyn’s situation. She is receiving an artificial enzyme that is replacing the one that is missing. Mike wonders, could Evelyn not develop normally around the damage that has already taken place?
Mike wants to be optimistic and there are reasons to remain that way. He knows that they have something as a CLN2 family that families of kids with other NCLs do not have. That is a form of treatment. Evelyn is thriving in many respects but there are questions regarding her future and overall health that still linger. Evelyn did start treatment with Brineura very early compared to other children and gene replacement therapy has shown promise for arriving soon. If successful, this could be a real game changer and Evelyn would seem to be a prime candidate for gene replacement. Corrin struggles as she spends each of her days by Evelyn’s side. She sees her daughter’s struggles and the regression of skills, even if it is taking place slowly. She knows what she is feeling about what the eventual outcome might be if gene therapy, or a cure in a different form, were not to become a reality. Both Mike and Corrin put one foot in front of the other, making sure that Evelyn is given every opportunity to enjoy her life. Together, they are living life to the fullest as a family. They go on as many adventures as they can while doing things that Evelyn enjoys. Mike and Corrin also try to make life as normal as they can for their kids, especially in the case of Dominic. They try to keep him in the spotlight as much as possible. It’s not hard to see that he is a special little man. Having a family is what our hopes and dreams for the future revolve around and it is so painful when all of that is disrupted by something like Batten disease. Families do adjust to a different type of normal because they have no other choice.
Hope in the form of gene replacement was given to Mike and Corrin as soon as Evelyn was diagnosed. A company named Regenxbio had made tremendous progress in this area and gene replacement was seen to be on the horizon. This is pending approval by the FDA. That was supposed to be in 2019 and then a letter came out extending things another year. It is now 2022 and gene therapy for CLN2 Batten has yet to begin. My heart breaks for these families because the promise gave them a lot of hope. Whatever the reason, Covid-19 or otherwise, greater emphasis needs to be placed on getting this therapy approved. CLN2 Batten is one of the more common variants of Batten disease. Although it is rare in terms of the number of cases, it still affects a lot of children in total. For Mike, this is his beloved little girl that we are talking about. The situation with this form of therapy is urgent for Mike and Corrin. If only everyone felt that way. Mike shares his feelings, “The FDA says ‘its not like the sky is falling’ in response to us wanting a gene therapy but having Brineura available. And yet, no one can tell me what to expect for our daughter's future. It's unsettling. I picture our best case scenario that Evelyn can one day function like any normal child with autism…” The best case scenario that Mike mentioned could become reality. What if gene replacement became available tomorrow? Evelyn is at this point healthy overall because she was diagnosed so early. There are other children that would also meet the requirements of the program.
Mike refuses to give in to any negative thinking concerning the outcome of Evelyn’s life. They are in the fight and good things can happen. He instead tries to remain positive while helping his daughter to fight each day. Corrin as well, will not give up. She doesn’t sit around waiting for Regenxbio to gain approval from the FDA so that the trial can begin. Rather, she researches and finds groups and companies that she can reach out to, emailing those who she feels will respond. Staying active and involved helps Corrin to better deal with the stress of life as a Batten mom. It’s a life that not many can understand because things are experienced that most will never see in a lifetime. I think back to the time that I first started to do these stories. I would think about these kids and their families at the most random times. While at places like gas stations and while sitting at traffic lights. I would have to catch myself as my emotions would start to get the best of me. Other times, it would happen as I would write. Just like I am now. It would be because I structured a sentence a certain way or expressed a thought in a certain manner. This would often bring me to tears and it still does at times. The plight of kids that battle rare diseases like Batten often stirs the emotions. This is because seeing children fight a battle like Batten can be heartbreaking to those who pay attention.
I use words like special and amazing to describe these kids who are so strong and resilient. They go through so much and always bounce back from the adversity that they face. That is for as long as they are able to. I often ask the question, is it us or is it them? Is it the feelings that they produce in us or is it that there is something truly special about the kids that battle? I think that both answers have to be true. This is Mike and Corrin’s first born child. A love that is profound and undying has been revealed and the bond being created will only grow with time. It’s one that can never be broken. Life is different than what was expected but there are many days that sweet memories are being made in the midst of the difficulty. For those that advocate for these children and those involved in research for a cure …. Please don’t get distracted. There is so much that is taking place in the world but these children still deserve our greatest attention. They are so deserving of the help that we can give them and every bit of effort needs to be given. Don’t give up! I am the father of a most wonderful son with special needs and the love that I have for him has lent itself to those who battle. I have always had the greatest admiration and respect for the the families of kids who are warriors unaware. Working with the parents in writing these stories is something that I will always consider to be an honor and a privilege. Thank you Mike and Corrin, and by the way, thank you both for your service. Each of you are exceptional and Evelyn is a little jewel. I appreciate everyone taking the time to read this family’s story.
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Highlighting a previous blog that might interest you:
Journey Unexpected - The Rich Family
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the pieces and will yourself to do your very best. A love that is profound and a bond that is stronger than any other is formed. Two little beauties in one family is two, too many but you seek to make a difference! A journey unexpected...