“When that geneticist came into the room, she grabbed her stool, sat down and rolled right up to me as she placed her hands on my knees, all while maintaining eye contact. Bailey had Batten disease and she was so sorry to have to deliver this news.”
Bailey’s Mom and Advocate
Two people meet and fall in love. It's a theme that runs through most all of the stories that I have written. Isn’t it true … this is much of what life is all about? Two people falling in love and having a family together. Having children is the natural thing to do and so many of us look forward to all of the events that come with this. There are not many of us that would focus on the possible struggles that may occur. We just want to experience the joy of being part of a family and we accept that struggles are part of the process. Every family will have a bit of trouble along the way. Cuts and scrapes, broken bones, these are some of the things that one would expect. How about a little rebellious behavior during adolescence? Sometimes, more will come along than would be expected but hopefully, the things that are faced together can be overcome. The focus is, or at least it should be, raising children that you can take pride in and making memories together as the bond developed grows over time. All of the events that are looked forward to are experienced as our plans come to fruition. The things that we strive to teach our kids end up serving them well in life. When that happens, a person feels a sense of accomplishment and pride as a parent. A lot of people will have a number in mind when thinking about the size of family they desire. For some, an only child sounds good. For others two or three is a good number. Some have no number in mind. They just want as large of a family as they can handle.
I’ve long since thought that two children is a good number to have but that opinion was developed after we had three boys of our own (My parents also had three boys of which I am the middle son). We were challenged by having our attention divided three separate ways and that was especially true because our third son was born with special needs. I have some observations concerning the pecking order that exists within the family hierarchy. Actually, more so with the status that a sibling has with his or her given position within the family. The oldest sibling almost always has a position of honor and is often looked up to by the others. They are always the first to get privileges that the others are too young for and major achievements come to them before they do with their younger brothers and sisters. Everyone has their place in the home but if you will allow me, I would like to move ahead to the baby of the family. This position in the family home is also a special one. The baby usually has the protection of the older siblings and can often be much loved by his or her brothers or sisters. Sometimes though, a favored status with the baby of the family can bring a bit of jealousy. Often, the baby sibling is with mom and dad for longer and a deeper bond may develop. There is more that can be said but I think that you have the idea. What if, like in our case, the baby of the family is born with special needs?
There will already be a type of status placed with that child because of the position he or she was born into. But in addition, there will be added emphasis placed on the attention they receive because of the special needs. This may take attention away from the others and challenges could arise out of that situation. What about mom and dad and the way that their lives are changed by all of this? Being a parent of someone with special needs brings with it special challenges. A life that you once expected will be disrupted. Plans that you once had are now mixed with added responsibilities. An increased amount of care is needed and the number of doctors appointments required has grown. I can speak from experience and know from having our son Benjamin. Being the parent of someone with special needs disrupts what your expectations were and a parent has to adjust to lifestyle changes that were not expected. So often though, that person with special needs becomes the object of adoration for those who are in the child's life. Any person born with special needs requires help beyond the norm. This is because of a varying inability to grow into self-sufficiency but there is a situation that is even more difficult. It is one that normally would be completely unexpected. That is when a child is born with a disease that is rare and fatal. Whereas everything begins normally for a family in this situation, things begin to change. Symptoms that were previously unknown and which were not thought about begin to appear.
All of a sudden, a puzzle that needs to be solved is placed before the other members of the family, primarily, mom and dad. You have a child with special circumstances but you have no idea what it is that is taking place. What is it that is causing the issues that are occurring? Vision problems or maybe behavioral issues are taking place. In some cases, something more startling, like seizures. For some, solving the puzzle may take a lot of time and for others, the missing pieces may fall into place more quickly. False diagnoses may come in the process and frustration with medical professionals may occur. Eventually, the pieces fall into place and the answer is found. The news brings with it shock and great dismay. Your child has a disease that you previously knew nothing about and your world is turned completely upside down. This condition is fatal and it has no cure. The process of coming to terms with what you are dealing with as a parent, and as a family, is a long ordeal. Things will change. A person will go from complete despondency to discovering the will to help their child battle, all while the heartache continues. A determined type of love will build and a bond will grow that is stronger than any other. There is no silver lining in a situation such as this but what is seen by those of us that look on from a distance is obvious. The type of love that is shown in a situation such as this is a love that is like none other. A love mixed with heartache produces a love that is profound and undying. These are the details that I try to bring out in each story that I write and I hope to do the same in this next story. Let’s get started.
A Life Together
Stories about rare families can take place anywhere, both here in America and in places beyond. This particular one begins in a town in the state of Massachusetts named Middleboro. Middleboro is a small to medium sized city that has roots in early American history. This with it’s presence being in the Northeastern portion of the United States. This particular story would begin to take shape when a teenage girl named Alicia Bullard moved to Middleboro with her family. It wouldn’t be long after moving into her neighborhood in the late 80s that Alicia would meet and make friends with a young man named Chris Morse. The friendship would quickly become much more than friendship as they would soon after begin dating, so to speak. This was when Chris was 16 and Alicia was 14 years of age. They both felt even then that their individual lives would include each other. The young couple became inseparable and when Alicia stepped out on her own, it was with Chris by her side. One might say that Chris and Alicia were meant for each other and indeed they were. The couple would be married in the year 1998 and soon after, they would become parents for the first time. Much to Chris and Alicia’s joy and wonder was the moment that they looked on together at their infant daughter. They would name her Ashleigh Nicole. She was so perfect in every way and this little girl was their very own. Could things have been more perfect than they were at that time? A young couple in love who were both now in love with this little person. They had brought their infant daughter into this world together.
What it must have been like at this time. They had their whole lives before them and now, that life included little Ashleigh. There was so much in store for them, both being at work and with time spent at play. Wherever they would wind up as a family, they would be together. Whether it was the sandy coastlines or the promise of better opportunities that drew Chris and Alicia to Florida, they would end up moving there in 2001. There were signs that indicated that Alicia’s long time job in Middleboro was about to end and their dwelling place was about to go through renovations as well. The cost of living and increasing their ability to own a home by moving to Florida was also a draw for them. All of these things considered, this would be a great move for them. Little Ashleigh had not yet begun to go to school and the time was just right. This family of three would settle in and would continue to live life together. Ashleigh would grow and do so well. She was everything that Chris and Alicia would want in a child but there was room for more, kids that is. The couple would want to increase the size of their family and that is what they would do. It had been a while since they experienced the joy of having a newborn in the house and it would be the year of 2007 when they would experience this once again. All would go well as Alicia carried this child and they would welcome him into the family with much joy. That’s right, this child was a baby boy and the Morse family now totaled four people. Mom and dad had a boy and a girl and they were so proud and happy. They would name their newborn son Dylan Richard.
Just like his big sister had years previous, Dylan was born with all of his fingers and toes and he was the perfect little man to Chris and Alicia. Things were really taking shape for this family of now, four people and everything was just as it should be. The Morse family would welcome baby Dylan into their home and life would continue on. Ashleigh was well on her way in her growth and development and now she was joined by her baby brother. Chris and Alicia were well established in their work and they were all really enjoying life in Florida. Dylan would continue to grow into a charming little man and just as he was beginning to take flight, his mom would be expecting once again. Child number three would soon be on the way and just as had been the case two times before, Alicia’s pregnancy would proceed without major complications. She would carry this child through to the Fall months and into December. Baby number three would be born on December the 4th of 2009 in Longwood, Florida. Alicia stated that she was in labor with this next child for a while. Things were slow to develop and it would involve a lot of walking around to help things along. The time would eventually come that Alicia would deliver her next baby and this one would be a beautiful baby girl. Just like her brother and big sister were at the time they were born, this little bundle was perfect in every way. They would give this baby the most perfect name, that being Bailey Rae.
Alicia had experienced the joy of childbirth twice before and the love that she had for her first two children would now be extended to baby number three. The feeling that she had as she held Bailey for the first time was simple. It was that their family was complete and in fact, it was. For the Morse family, three kids was the perfect number. Each one was special and had a special place in this family of five people. First there was Ashleigh and then, Dylan. Now there was Bailey, the baby of the family and that she would always be. Ashleigh had the big sister role to fill of course. No one knew at this time what an important role that would one day be. Dylan was now the middle kid, just like this writer is. So young when his little sister was born, he had all the potential in the world and a lifetime in front of him. Baby Bailey would come home to her family and she would grow and thrive in her beginning months of life. Maybe she was one that would be looked after and protected by the others. Bailey Rae was the baby of the family. Maybe she would be favored a little bit. Perhaps a little spoiled but still adored by everyone, even if it wasn’t always admitted. Whatever the case might be, life as a complete family was just beginning and there was so much to look forward to. There were many life events for all three children ahead and so many would be enjoyed together. It all started with two teenagers from a town named Middleboro. They met and fell in love and their story would now continue as the mom and dad of three.
Alicia would relay a fact to me concerning Bailey’s health during her first nine months of life. While there had been some minor health concerns with her older brother and sister during their early months, there would not be with Bailey. There were no concerns with her whatsoever at that time. Bailey would move right along, meeting all of her milestones of development, just as one would expect. Bailey would begin to walk and talk within the range of time that one would expect her to and she was a bright little girl. Life continued on as a family and there were no big concerns with child number three. That though, doesn’t mean that there weren’t some challenges along the way. As Bailey grew, there would be much involved when it came to this little person. I think that this writer was on to something when he placed emphasis on the fact that Bailey was the youngest of the three children in the house. Alicia would seem to agree with me, doing so as she said the following, “Bailey truly was her own person. The baby of the family, she definitely played the part!” It seems that there is often a special attachment between the baby of the family and his or her mother. That is even if it is not intended to favor one child over the another. Alicia said that Bailey was “very attached” to her. The attachment was so strong that Bailey was bothered when Alicia showed affection to others. Mom belonged to Bailey and that’s all there was to it! Alicia would go on to say that Bailey had two very different sides to her.
The Complicated Kiddo
There was the first side and that was Bailey the loving child, showering people with love and compliments. This in itself would be a wonderful trait to see in any child but the problem was Bailey’s lack of discretion. Alicia said that Bailey’s show of affection would include strangers. That would turn out to be a cause for concern as Bailey got older. This can be a dangerous world that we live in these days and you have to be careful who you reach out to. Bailey, being an outgoing child, did not understand this. Alicia stated that Bailey was too willing to talk to strangers. She explains further, “No matter how we tried to ‘scare’ her of the risks, it wouldn’t stop her from going up to someone and giving them a hug.” That was the first side of Bailey as a small person. Alicia would go on to explain the other side of her daughter. Knowing Bailey’s plight at the present time, Alicia feels a bit of guilt over sharing the negative characteristics of Bailey’s other side. It wasn’t so pleasant as she was growing up. Even with this, Alicia feels that it is necessary to share everything in order to tell the entire story. We have already mentioned the fact that Bailey was jealous of mom showing affection to others but there were other things. Alicia stated that Bailey was easily “set off” if she didn’t like something. Chris and Alicia’s other two children were mild mannered and more under control of their emotions than Bailey.
Was this just a difference in personality or was there more going on with her? Alicia said that she had always chalked it up to Bailey being the baby of the family. Bailey was one of a kind in this household. She didn’t bond well with her brother and sister and was easily offended. On top of this, she had a bit of a mean streak to her. Alicia would go on to say that Bailey was defiant and sneaky at times. Was this all normal behavior for the baby of the family or was there something more to it? What was responsible? Were these just behavioral issues only? Whatever the case may have been, the Morse family home was not always a happy one because of the drama that Bailey would bring to them. Bailey would not grow out of this and her parents would decide to dig a little deeper into the cause of what was taking place. Chris and Alicia would one day find out that this was all symptomatic of something beyond just poor behavior. The search for an answer was just beginning. All that was being seen in Bailey was taking place as she was growing up. Bailey would do fine with her peers in school and she was even on point academically. The problems with her behavior were really taking place at home. Life continued this way and Bailey would progress in her early education. What would take place a little later was concern over issues with her eyesight. This would eventually lead the Morse family down a path that was life changing for everyone as this was just the beginning of things.
It would all begin in the summer of 2018 as Bailey was seen for a routine yearly physical. She had never mentioned anything about problems with her eyesight but would be referred to an eye doctor during the physical. Bailey would end up seeing three different eye doctors during the summer and none of them would see a lot wrong with her eyesight. One of them did say that Bailey may be slightly nearsighted and one of the doctors would give Bailey a low level prescription for glasses. The glasses would do little in the way of help. It was impossible to get a straight answer from Bailey as far as her eyesight was concerned. This according to her mom because at this point, dishonesty was one of Bailey’s character traits. Even though Bailey would not talk about her vision, her behaviors were very telling. Alicia stated that Bailey was walking and running into things and tripping easily. There were other signs as well that her vision was not the best. The issue with her eyesight would begin to take place over that summer, between the 2nd and 3rd grade, and the whole thing seemed to occur all of a sudden. The only thing mentioned previous to summer break by Bailey’s teacher was that she had been helping her with math in the mornings. There was nothing said that would indicate that Bailey was struggling to see things at school. At the same time, Bailey’s attitude at home and her ability to get along with her family continued to be a challenge.
One might wonder why something like this was taking place at such an early age, pre-adolescent. There would be more going on with Bailey’s medical issues as time continued and a battle would soon begin with doctors and the insurance company. The fight to get answers for what was taking place with Bailey would eventually wear on Alicia to the point that it affected her health. You see, Alicia was involved in her own battle with Crohn’s disease. As the issues with Bailey began to grow in severity, so would the issues with Alicia’s own health. Sometimes when it rains, it pours. There was much more to Bailey’s situation than what has already been stated. You would think that getting your child in to see a specialist such as an ophthalmologist would be no problem but Alicia was having problems getting this approved. This was because regular eye doctors were saying that there was nothing all that wrong with Bailey’s vision. Alicia would be persistent because she knew that there was more to Bailey’s situation than what was noted by the other doctors. She would eventually get the referral that she sought however, more would take place before that happened. It was during the time that Alicia was dealing with the various eye doctors that she had begun to consider other possibilities. That is concerning Bailey’s health issues. Perhaps what was taking place had something to do with a problem in Bailey’s brain. One incident had taken place in June of 2018 happened as Bailey ran into a metal pole while at daycare.
Alicia was concerned at the time that a concussion may have been sustained. She had wanted imaging of Bailey’s brain done at the time she was being treated for the injury but this would not happen. Instead, the staff treating Bailey would simply glue her wound shut and send Bailey on her way. With everything that Alicia was seeing she would seek to get Bailey in to see a neurologist. This would soon lead to more frustration and still, there would be difficulty in getting Bailey in to see an ophthalmologist. Chris and Alicia were becoming more desperate in their search for answers and something had to be done. Finally, and after other extra appointments with the pediatrician, Alicia would be given the referral that she sought for a neurologist. The referral to the ophthalmologist would soon be granted also but they would not schedule Bailey for an appointment. This was because the people at the ophthalmology office first wanted to see the results of any tests run by the neurologist. Is there any way in which we can understand what it is like to deal with a situation such as this? A lot of parents that have a child with rare circumstances will go through something Alicia had experienced. There will be many doctor appointments and phone calls. So much time and energy will be expended in the pursuit of getting answers.
A Daughter's Struggle
It will leave a person exasperated and confused. Well meaning people in the medical profession can become sources of frustration without meaning to be. Dealing with a bedside manner that is less than comforting can leave a person feeling hopeless. To some, a patient could just be another appointment on the schedule. There would soon be another development in Bailey’s situation that would be alarming and a great source of concern. That would have to do with an apparent decline in her cognitive abilities. Bailey had started the 3rd grade in the fall of 2018. Just a couple of weeks into the new yew school year, people started to notice that Bailey was struggling. Much to Alicia’s irritation, the school nurse suggested that Bailey be seen by an eye doctor. At this point, Alicia was keenly aware that more was going on with her daughter than just problems with her eyesight. This, knowing that Bailey’s eyesight problems were part of a larger issue. What would become very alarming to Alicia came as a result of academic testing that Bailey would undergo at school. The testing was initiated because Bailey was starting to slip in her grades and she was having trouble with homework. Bailey’s parents would receive the results of the testing six weeks later and the results were cause for serious concern.
Six months prior to this time, Bailey had been testing at the 2nd grade level and she was on track academically. Now, she was testing at the level that you would expect for a child in Kindergarten. Bailey had regressed significantly. What was it that was taking place with the baby of this family? The neurology appointment would take place and testing would soon be performed. The neurologist would have an EEG and an MRI done but the results would not lead to any answers. Both test results revealed no negative findings. In other words, everything appeared to be just fine with Bailey’s brain. This led the staff at the neurologist office to believe that Bailey’s issues could be purely behavioral or related only to the issues with her vision. The answer was not as simple as this and Alicia knew it. This assumption would leave her only further frustrated. This was all taking place in October and November as the year 2018 was nearing the end. Alicia recalled telling the neurologist about an incident in which Bailey was bringing her empty popcorn bowl to the kitchen counter. Her mom had been busy loading the dishwasher and failing to see what was in front of her, Bailey fell across the bottom rack of dishes. It was really fortunate that Alicia had turned all of the knives with the blade end down into the rack. Had she not, Bailey could have been seriously hurt. The doctor's response was only that Alicia should be sure to keep the dishwasher door closed. Perhaps the doctor was missing the entire point. Alicia would end up grabbing Bailey and storming out of the office. She didn’t know who else to turn to for answers.
With the results of the neurological testing in place, Bailey could now be seen by the ophthalmologist and this is where the search for answers would begin to turn in a more positive direction. It would be Christmas eve of 2018 that Bailey would finally have her eyes examined by an ophthalmologist. The holiday had to have been one that was filled with concern and distraction but this is oftentimes the case. This type of an eye doctor would be able to do a more thorough examination and he thought that he was seeing something on at least one of Bailey’s retinas. For this reason, the ophthalmologist wanted to refer Bailey to a retina specialist. This meant that Alicia would have to go through another approval process and this would lead to further difficulty. One situation would arise in which a local retina specialist would want to refer Bailey to a well known facility in Miami. This was because he suspected that Bailey had a condition called Retinitis Pigmentosa. The doctor wasn’t 100% sure and that was the reason for the referral. The insurance company would again, decide to deny this and would fail to inform the family of the denial. This happened even as Alicia was spending a lot of time on her breaks and lunches trying to set up the appointment. While doing so, she was sitting on hold while being unaware of the decision to decline. Ultimately, and after more frustration, the approval would come from the insurance company and Bailey would be seen by a specialist in Jacksonville. Over the course of time as the family was searching for an answer, there would be other troubles with doctors and the insurance company.
Oftentimes, doctors wouldn’t be able to fit Bailey into their schedule for several months and Alicia would have to restart her search for a specialist. Such is often the life of a parent seeking this kind of help for their child. The rest of a person’s life does not stand still either while all of this takes place. The specialist in Jacksonville would confirm the diagnosis of Retinitis Pigmentosa. What does RP involve? This is a rare, inherited degenerative eye disease that causes severe vision impairment and the symptoms often begin in childhood. They include decreased vision at night or in low light and loss of side vision (tunnel vision). It was understandable that Bailey would be given this diagnosis given the symptoms that everyone had seen. Neither Chris nor Alicia knew of this being in their family history but that didn’t mean that it hadn’t existed. There is no cure for Retinitis Pigmentosa but medications could help treat the complications of this disease. This would be Bailey’s initial diagnosis and it was something that the Morse family could live with. Chris and Alicia were assured that Bailey’s life could go on for up to decades before vision loss was severe. She could adapt and learn to live with this disability. Having what the couple thought to be the answer must have given them hope for Bailey and their future together. Everybody could adapt to this situation and could be at Bailey’s side as she learned to adapt herself to the challenges associated with having RP. Life would go on as the next six months passed by.
Bailey would have more appointments and a significant change to the family’s outlook would occur as she was seen again by the retina specialist. This would take place seven months after her diagnosis. The doctor found that Bailey was now legally blind and he was concerned with how fast she was losing her vision. This would normally not be happening with RP. The doctor thought that there might be something else taking place with Bailey. This was the first time that anyone in the Morse family had heard of something named Batten disease. Was this the actual source of the decline in Bailey’s eyesight? The retina specialist wanted genetic testing performed right away in order to rule out Batten disease as the cause. Of course, Bailey’s family would be worried over something like this, the doctor however would reassure them. He felt that the chances of Batten being the cause of her visual decline were slim. After all, she wasn’t showing any other symptoms like seizures or random falling. This was just a precaution but one that was necessary for making sure. Just like was the case with the retina specialist, the geneticist was also located two hours away in Jacksonville. They would be there to submit bloodwork from Bailey but also from Chris and Alicia. So it was on December the 23rd of 2019 that the family would make the trip for the bloodwork to be done. The hope was of course that the results would come back negative. Very concerning was the fact that they may have to wait 4-6 months to get the results back. This would leave a lot of time to wonder and learn more about the horrific details of Batten disease.
An Answer Not Wanted
It wouldn’t take as long as they had been told it might to receive the results. While Chris and Alicia were waiting, and one month previous to gaining the results, Bailey’s teachers reported the fact that they thought she was experiencing seizures. They were silent, or absence seizures as they are often called. One might say that receiving a call in February of the next year was merciful in a sense but maybe that fact could be argued. The results of the testing had come back just a couple of months after the lab work was done and the way that the news was presented left Bailey’s parents lacking confidence for a good result. First of all, they were advised that they didn’t need to bring Bailey with them. The genetics office also wanted to make sure that Chris would be present as well and they got the couple into see the doctor the very next day. The trip to Jacksonville must have left the two of them feeling anxious. Again, the doctor's office was two hours away. What would this couple face together with Bailey in the future? There was so much yet to come and everything hinged on the news that they would soon receive. There have been times that parents have shared the fact that they had received a diagnosis through an impersonal phone call or worse, an email. That would not be the case for the Morses as the doctor entered the room. This doctor was full of compassion and concern over the news that she would deliver. The geneticist sat and got down to Alicia’s level. Making eye contact, she expressed the fact that she was so sorry to have to deliver the news. Bailey did in fact have Batten disease. She would be diagnosed as having the CLN1 variant of Batten. The day that she was diagnosed was February the 4th of 2020. Alicia said that this date was exactly one year after Bailey had been said to have Retinitis Pigmentosa. All of a sudden everything had changed. Bailey no longer had a disease affecting only her vision but was now diagnosed as having a disease that is fatal. She was now a rare disease warrior and she and her family were on a journey together. So many things were explained with the diagnosis.
People had been pointing to Bailey’s vision or thought that perhaps there were behavioral issues at play. Finally, there was understanding. Not only did Bailey’s mom and dad now know the reason but so did the people in the medical community that were associated with Bailey’s care. Many had never heard of Batten but now, their eyes were open and they were able to see how this rare disease had affected Bailey. There had been CT Scans, MRI’s, and EEGs performed but none of those tests could bring the truth to light. Bailey’s complete diagnosis would come through the actions of an alert doctor who knew genetic testing was necessary. It was needed in order to gain the answer that the family sought. Even if the outcome was not what was desired. The truth had to be known. Shock and utter dismay would follow. Alicia’s emotions were at an extreme high and the tears just flowed at times. Who could not understand how this would be so? Regardless of the challenges that had come with Bailey, she was still her mama's baby and she was so loved. How was it possible that something like this was taking place? How could her baby girl have a fatal disease for which there was no cure? There were so many questions regarding why this was happening to them as a family. They finally had the answer as to why things were different with Bailey but the answer was not one that they had wanted to receive.
Bailey had been different from her older siblings while she was growing up and she hadn’t bonded well with them. There were apparent behavior differences and she was difficult to deal with at home. I am sure that at times, frustrations would boil over and it was difficult to remain patient. Emotions would run high. This brought with it some guilty feelings at times and now, there would be more feelings of guilt as the diagnosis came. Alicia explains, “In the early years there was a lot of guilt because she wasn’t easy. Once we got the diagnosis, more guilt. How could we be so frustrated with her, she couldn’t control her behaviors!” Once it was known what it was that was taking place with Bailey, there would be an increase in understanding and an effort towards showing greater patience. Alicia stated that they remain devastated but they are no longer in denial over what they have learned. They now understand that this is part of their life. A big and very involved part. Daily, they experience a type of love that is mixed with heartache. The heartache brings other complications with it. As was mentioned earlier, Alicia suffers from Crohn’s disease. Crohn’s is a type of inflammatory bowel disease. This can cause inflammation of the digestive tract and that brings other complications. Pain, fatigue, and digestion issues of course. This can lead to weight loss and malnutrition. It is often painful and debilitating, and it can lead to life threatening complications.
Alicia has seen the worst flare up of her life in recent times and it has come as a result of the stresses related to Bailey’s Batten diagnosis. This has resulted in the need for surgeries and medications. Sometimes, when it rains, it pours folks. Alicia has been on disability since October of 2020 because of this. What about the other members of this family? Bailey’s dad, Chris, deals with things by staying busy around the house. Much of that time is spent adapting the house to Bailey’s changing needs. Alicia shared that Chris had back surgery back in the Fall of 2019. This along with his age concerns her but Chris won’t quit doing what’s needed for Bailey. There is no quit in him, he is the dad. What about young Dylan, who is 14 years of age? Alicia says that most of the time, Dylan locks himself away from things in his room. She stated that he is typical for a kid his age, spending way too much time on his gaming system. You know what happens to kids like that? They turn into computer programmers or other types of IT professionals (that’s what happened with our son Daniel). Alicia says that Dylan can be a really funny guy with a great sense of humor. That is when he “graces the rest of the family with his presence”. Dylan and his big sister Ashleigh have always had a great relationship with each other and a strong bond exists there. Ashleigh is a great source of pride for both Chris and Alicia. She has grown into a wonderful young adult and her presence in the family is so appreciated. Her parents not only appreciate the person that Ashleigh is but they also appreciate the level of help that she offers them with her sister.
Ashleigh, who is 23, has grown to be an amazing big sister to Bailey. She is very understanding of her and the bond between her and Bailey has now grown to be stronger as well. In Alicia’s own words, “Ashleigh is so amazing and a HUGE help to us.” Together, the Morse family lives with a tragic set of circumstances as life relates to Bailey. They do have to watch and see her regress. They know full well what this means as they see what is taking place as she declines. They also see Bailey’s resilience. They know that Bailey is not able to understand what is happening to her but they do know that she is happy. The disease does not allow her to know what is taking place with her health. Obviously, she is aware of the fact that she is blind and she calls the absence seizures that she experiences “shadows”. Her behavior has changed as the disease has progressed a bit. Alicia stated that the tension that once existed with her is now gone. Bailey now has “a happy-go-lucky attitude in life. She loves to color, even if as her mom tells us, she just scribbles. She loves music and her favorite television shows. Bailey loves playing with blocks and her Shopkins toys. Alicia explains what she sees as Bailey plays, “Her playing is not like a typical child and it’s heartbreaking to see her limitations but we’re thankful she can still do what she can.” Just like the other Batten families that we have read about, the Morse family is doing their best to create happy times for Bailey and precious memories that will last a lifetime for all of them. Bailey remains part of the family experience as they live life together.
A Love Complicated
There is laughter, yes, but there are also challenges that are not faced by many. When it comes to some of the minor problems faced by others and the drama that is self-inflicted, Alicia has little patience. If only people could walk a mile in the shoes she has to wear most days. Perhaps they would see things differently. This, I firmly believe is true! Alicia shared with me some additional details concerning the challenges that they face as a family, “I know we both have a hard time seeing other children living their best life, knowing Bailey will never graduate, marry, or have children … It’s also tough accepting that none of her little friends play or talk to her anymore ….” The attitudes that they see in the adult population around them varies as well of course. This all would be heartbreaking for sure but there are also opportunities for the family to see the good in people as others seek to help. The level of support from friends and family varies but there are some people who really stand out in the crowd. Alicia explains further, “It has also opened our eyes to the generosity of people. We’ve received so many words of encouragement and genuine concern for Bailey’s well-being. We’ve received surprise packages in the mail for Bailey, as well as multiple donations so that we can take her on memorable excursions. The donations also allow us to continue to make adjustments to our home to accommodate Bailey’s needs, as well as give Chris freedom to be involved by taking time from work as needed.”
It is true that having a person with special needs in your house requires a lot of additional work. This is simply because special individuals cannot do everything for themselves. A young girl who is blind and suffers from dementia would certainly fall into this group. Bailey requires a lot of assistance and needs to be guided around the house, bringing her to the bathroom and any place that she needs to go. A big concern is just keeping her safe and out of harm's way. Even with the additional help, there is no guarantee that Bailey would remain injury free. Alicia shared that poor Bailey recently fell face first, chipping her front teeth and biting her lip pretty severely. How do you prevent something like that from happening? It would both be heartbreaking and of great concern and I know that this family is doing their very best. Batten disease is a monster! Bailey’s family is always on watch for seizures and random falls. In addition to the extra attention that needs to be paid to Bailey are all of the doctors appointments that have to be attended. These are a constant in this household. All of this together is tiring for those that help with Bailey’s care, none more so than with her mom Alicia. Added to this is the anxiety over what is to come as well as some issues related to Bailey’s mental health. Alicia explains, “The anxiety of what’s next and the constant care, the relentless repetitive questions, always the same questions, multiple times an hour (we’re told that’s the dementia) .… Her speech has been severely affected and it’s tough to understand her at times.” There are always guilty feelings over the mix of emotions. This isn’t easy. It’s nowhere near being easy.
Bailey can be very frustrating and the attention needed is really demanding and yet, the love that they have for her as a family is immense. There is a mixture of being heartbroken over the effects of the disease and the love that they all have for Bailey. Alicia started with two individual words when I asked her what her love for Bailey is like. She simply used the words “special” and “complicated”. Those who know what it is like to care for a child like Bailey know exactly what Alicia is saying. She adds with the following to what has already been stated, “We love her (Bailey) so much, no matter what. But we’re tired. We have other kids that need our attention but don’t always get it. This is definitely an emotional roller coaster!” Alicia does know that they all need to remain thankful that Bailey can still do the things that she is able to. Much more will follow and she knows that they need to enjoy having Bailey in their midst. I’ve often said that what is seen from a distance can be different than what is experienced by those that are in the middle of the battle. Dealing with the daily grind of caring for someone like Bailey ….. All that may be felt is the anxiety that is created on any given day. What others might see from a distance would be the love that is being poured out on Bailey’s behalf. Does that make sense? Bailey is the baby of the family and that is a special position within the family hierarchy. Chris and Alicia had no idea how baby number three would one day impact this family. Bailey will always be a part of who they are as individuals. This is a certainty.
I generally ask for a parent's help in choosing pictures to include with each of these stories. I’ve written a lot about the challenges that are being faced by this family. The pictures included do add some details that may have been missed by me. There is joy and there is laughter. It’s just that there are also challenges for this family that will not be faced by many. This includes grieving for someone that is still with them. These two teenagers from Middleboro would grow into a life together and find that it would be different than what they had envisioned. I ran across this quote from an unknown source that Alicia had saved in her picture albums. Seeing it sent my closing for this story in a different direction and the quote is so perfect. Here is what it said, “Sometimes you have to let go of the picture of what you thought life would be like and learn to find joy in the story you’re living.” The story that the Morse family is living includes the love that they have for Bailey. It’s a type of love that is complicated. There is joy but there is also a variety of other emotions involved. We’ve talked about the challenges and the heartache but there are also those sweet details that exist any time you provide care for someone like sweet Bailey. One other word, or rather, phrase that Alicia used to describe the love that she has for her daughter is the phrase “never ending”. There is an unconditional, profound, and undying type of love that is being given to Bailey. That love will never go away. This family’s story will continue and Bailey will always be a big part of who they are as individuals. Her life will affect the lives of each of her family members like no one else's can. Much about Batten and the type of love that it creates is complicated. Bailey’s impact on her family however, will be without question. Another warrior unaware and another, very special family. I appreciate the opportunity to help tell their story.
Blogger and Advocate
Concerning kids who battle Batten disease (neuronal ceroid lipofuscinoses or NCLs), “Is it them or is it us? Is it the feelings that they produce in us or is it that there is something truly special about them? I think that the answer has to be all of the above. It is them, but they also do something to us. Once you give a little piece of your heart to these kids and their families, they come close to taking all of it.” That is what happened to me!
Hello Everyone. These kids changed my life to a large degree as I was taken over the plight of one little girl. Through these kids, I have learned that it is important to look beyond ourselves and take notice. I've stated that Kids that battle are the most special and the most amazing and I believe that this is true. They are strong and resilient, even if unaware of the plight that they are involved with. I first became aware of kids that battle Batten disease as I learned of a little girl who fought the disorder. She really caught my attention and I began to write through a series of events …. never looking back. Hidden in between the titles of all of the stories is my own. These kids taught me how much I love to write. I’ll never win an award but the kids that battle taught me that I have a passion for sharing their stories with others. They are stories that are full of heartache and grief. From a distance though, you can observe a love that is profound and undying.
I have now branched out a bit to include some of the families whose lives have been changed by having a child who battles MPS (mucopolysaccharidoses).
The science behind how the cells of the human body work is fascinating. That being said, the result of what takes place when those cells don’t function correctly is devastating. Lysosmal Storage Disorders are my area of focus and these two groups of diseases are both LSDs. Perhaps I will add another lysosomal storage disorder community as time continues. Whatever the case may be, this all started because I was made aware of the plight of one little girl who changed me. I hope that you will take the time to look within. Thanks for doing so.
Blogger and Advocate
HOW THIS BLOG WORKS -
Take the titles listed below and go to month and year listed in the archives below (way below).
January 2017 -
*The Story Between The Lines
February 2017 -
*My Kind Of Royalty - CLN2
March 2017 -
*The Caring Type - CLN2
*Face to face: A Fairy-tale -CLN3
April 2017 -
*No Ordinary Love - CLN2
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story -CLN2
June 2017 -
*Seth and The Healing - CLN2
July 2017 -
*Little John and The Reason - CLN2
*Sands and The Scottish Princess - CLN3
August 2017 -
*A Rare Kind of Devotion -CLN2
*The Giggle Box - CLN2
September 2017 -
*Sweet Montanna and the Status - CLN3
October 2017 -
*The Blog about my Blog
*Sebastian's Story - CLN8
November 2017 -
*Kayden And The Change In Plans - CLN3
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are - CLN2
*Brock and The Priceless Memories - CLN8
*Jamesy Boy and The Treatment - CLN2
*The Priceless Princess From Beyond - CLN2
*That Kind of Love - Conner's Story - CLN2
*What I See (She is a Butterfly) - CLN1
*No Longer Alone - Kristiina's Story - CLN2
*Things We've Talked About - Oscar's Story - CLN7
*The Reason Why - Hannah's Story - CLN3
*Kayla's Perfect Princess - Breanna's Story - CLN2
*Warriors Unaware - Mia and Kaleb - CLN2
*Her Little Story - CLN1
*Someone Like Raelynn
*Forever Royal - The Final Version - CLN2
*Awfully Beautiful - The Life of Noah and Laine - CLN2
*A Lifetime of Love - Tegen's Destiny CLN1
*Forever Beautiful - Gabi's Story - CLN7
*The Miracle Baby - Amelia's Story - CLN1
*Dylan's Life - A Small Town Story - CLN2
*Princess Grace and the Challenges - CLN2
*Anything for Tessa - Her Story - CLN2
*Haley Bug's Battle - A Family Story - CLN1
*Journey Unexpected - The Rich Family - CLN2
*My Life, My Everything - Lydia Rose - CLN2
*A Love That Hurts - Shashka's Story - CLN2
*The Things Looked Forward to - Addy’s Story - CLN3
*Love Complicated - Bailey Rae's Story - CLN3
*So Many Questions - Evelyn's Story - CLN2
*The Feelings They Produce - Violet's Story - CLN2
*Because of Love - Frankie's Story - CLN2
*The Need to Breathe - Scarlett's Story - CLN2
*The Beautiful Light of Haidyn Grace - MPS3
*Any Distance Traveled - Reagan's Story - MPS3
*The Missing Someone - Kiernan's Story - MPS3
*The Transformation - Victoria's Story - MPS3
*Not by Accident - The Charlie Grace Story - MPS1
*The Difference They Make - Harvy's Story - MPS6
*Love Profound - Veda Rae's Story - MPS3
Highlights from the beginning. When the blog was named gregster60.com -
Benjamin's Daddy - March and June of 2016 - Revised May 2017, titled Benjamin's Daddy Revised.
My Fearless Adventure - April and May of 2016
A Different Type of Warrior - January 2017
Larry - February 2017