“As the seizures were occuring back then, I did not know what to think. I had never seen a seizure before Raelynn started having them, so I was honestly terrified. I was very concerned because I did not know why this was happening.”
Why these families and what is it that makes them so special? I have talked about this at length on several occasions. To be told that your child has a fatal disease is without question, the most devastating news that a parent can receive. That is what each family faces when they are told that their child has Batten Disease. The way that devastation and grief gives way to determination is almost always a central theme in these stories. Going from complete despair to having the will to help these kids fight a battle is always worth talking about. Ordinary people that have been asked to do something that is extraordinary. Have I worn that phrase out yet? Those of us that are on the outside looking into the Batten community know that it conveys the truth. This writer realizes that there are several thousand rare diseases that affect children. I believe, however, that the families that battle Battens represent well all families affected by these diseases.
I truly believe that what Batten families go through and the way that they handle the journey is remarkable. I however, never want to make it seem that I am trying to glorify the experience. I know that it is truly heartbreaking, but when I read the details of undying love and total devotion to these children, it makes me want to share these stories with others. Never, have I meant to make the Batten journey sound like something that should be sought after or something that is wonderful to experience. The journey that is Batten Disease does carry with it a right of passage. That makes those who take it part of a special group. Only they can truly understand what it is like to experience such a thing. Then, there are the children. These kids do something to me. The things that they teach us about what is important in life, while being unaware that they are doing so. Well, I can’t even find the words. The way that they remain happy during the most difficult of circumstance is just amazing to me. The way they fight with everything that they have and the way that they tug at our hearts while they do so.
I always appreciate it when I get comments from those who are connected to the Batten community in one way or another. This time, I received a comment from my long distance friend Joan Avery. She is a very special Batten granny who has a granddaughter named Montanna. Montanna battles Juvenile Batten Disease and Joan contributed to the story that was done about Montanna. It was titled Sweet Montanna and The Status. Montanna is another beautiful young lady that is in the middle of the battle and her and Joan are, of course, very close to one another. Joan shared what she sees in Batten children in a concise but insightful manner with the following, “I haven't seen one single Batten face that I did not consider beautiful! These kiddos and teenagers are a reminder of the beauty, love, and desires that this disease has tried to steal from them. They are some of the most precious humans I know. They want nothing more than to be seen and recognized for the person they are. I love every single one of them!”
Joan speaks out of her own experience as Montanna’s grandmother and I would want to echo her words. This, by stating that I would like these kids to be seen and recognized for the special people that they are. That is the biggest reason that this blog exists. These kids are the most amazing and they change people’s lives. Yes, there is much sadness involved but the effect that these young warriors, and their families, have on the rest of us is without question genuine. The families will tell you that they are just doing what needs to be done but the rest of us may see things differently. Those of us on the outside see what they do as extraordinary. Thus, the meaning behind my little phrase that I like to wear out. To work past the grief and to set out to take each day, one at a time. That is something that people like me greatly admire about Batten caregivers. And again, there are these children and young adults that I consider to be the most special. Joan is right. Batten Disease will try to take away everything that makes them who they are. In the process they show us a heroic kind of effort that is seen in warriors that are unaware. They battle SO sweetly and this writer is totally stuck on them. One such warrior is someone like little Raelynn. She’s yet another one that will steal your heart, never to give it back. This story belongs to her and also to her mom. The name of Raelynn’s mommy is Morgan Myers and their life together makes up another very sweet story. This is how that story begins.
Her Little Story Begins
Just as it would be for most young women, Morgan dreamed of having a family. She had a man in her life that she cared for deeply and she wanted to spend her life with him. This life would include children and she was so pleased to find out that she was expecting her first child. Her pregnancy would go smoothly, with no real complications. In addition to that she was told that she was going to have a little girl. Morgan would have a princess in her house and for this reason, she was more than excited. As June of the year 2013 approached, so would the time that Morgan would give birth to her baby girl. This precious bundle would not make her entrance into world with ease. Morgan would end up being in labor for 34 hours. Tried as she might, she would not dilate to the point that her baby would come to her in the natural way. As a result, her princess would be delivered by Cesarean section. Little Raelynn Faith, as she would be named, would make her entrance in the life of Morgan on June the 1st of 2013 at 5:30 in the evening. Raelynn was flawless. She had all of her fingers and toes and she was covered in brand new baby skin. She was perfect and perfectly beautiful. Just look at her!
Right there by Morgan’s side for the big event was her mother Rhonda and her best friend Kylie. Raelynn was born at Meritus Medical Center in Hagerstown, Maryland. She was born at the healthy weight of seven pounds and ten ounces. Seeing her little girl for the first time was unlike anything that Morgan had ever experienced. She felt nothing but pure joy as she held Raelynn for the very first time and that joy was shared by her mom and best friend. Morgan shared that the experience also left her feeling a bit overwhelmed. This, as she sat there, looking at Raelynn’s adorable face. She was thinking about the responsibility of being a new mom, and that, at such a young age.
Morgan would, in fact, find parenting to be a challenge. Just as any first time parent would. She, however, would encounter challenges that are not seen by many. There would be a set of rare circumstances surrounding little Raelynn that no one could have seen coming. There was no way to know as you looked at this most perfect little creation. All seemed to be fine at the time that she was brought home. Raelynn continued to grow and amaze people as she did. She quickly became Morgan’s focus and the center of her attention. Raelynn brought so much joy into Morgan’s life and who could not understand how that would take place. Watching children as they grow is an experience that is never forgotten. All of the cute and priceless things that kids do as they are growing never leave our memories. They provide memories that are priceless. These are some of the things that we look forward to and they are the things that we never forget. Raelynn’s early development was right on track! She was reaching her little milestones on time and that made Morgan so happy as she looked on. Morgan said that Raelynn would learn to walk at age ten months and she was saying so many words early on. She was just so adorable to look at and Morgan was pleased with what she was seeing.
As Raelynn was approaching age two, Morgan noticed that her speech was a little bit delayed. She wasn’t picking up on the gift of gab like other children her age. This can sometimes be the case and children most often catch up with their peers later on. Everything else was right on track and so Morgan wasn’t too concerned at the time. Things would change in Morgan’s thinking as Raelynn turned three years old. Her speech was not catching up to others her age and it was becoming more of a concern. Could this have been something that was a precursor to a larger problem? Was it a symptom of something yet to come? At the time, Morgan was thinking that it was something like Autism developing in Raelynn. However, it would be soon that other things would start to happen. Things that would concern any parent and things that would lead any parent to search for answers. It was October of 2016 that Raelynn had her first seizure.
Raelynn had come down with a stomach virus and had been taken to the emergency room at the hospital. That is when the seizure occurred. At the time, Morgan had attributed the seizure to a high fever or perhaps to the Zofran, which was the prescription that Raelynn had been given for her upset stomach. I know from doing other stories that this would have been the first thought of most any physician concerning Raelynn after the first seizure. I wish that this could have been the case, but it was not. Raelynn had another seizure after only a few days. She then continued to have them about once every month or every few weeks. This, of course, was alarming to Morgan and all of those who were close to her and Raelynn. Morgan had never witnessed a seizure before they started to occur in Raelynn.
Much of the support that Morgan would receive would come from her mom. As for Raelynn’s father, he was nowhere to be found. This because, according to Morgan, he was scared off by the fact that Raelynn was having seizures. I don’t want to digress here, but I had some thoughts about how people respond in a time of crisis and what makes a good parent. What really comes to mind is some of what I have become aware of since the time that I started doing stories about families that battle Batten Disease. There are certainly many amazing moms out there. I have often said that there is no love like a mother’s love for her child. It is, however, true that there are some really amazing dads out there as well. I am privileged to know of some that exist inside the Batten community. What I have found to be so very special is the men that have stayed by a women’s side even when they have other options. By that, I mean men that are “all in” concerning a relationship with a women even if it includes a child who has something like a seizure disorder. This is especially true when it includes the diagnosis of a fatal disease. These are the kind of men whose actions are, in my mind, heroic as they can be counted on when difficulties arise. For them, a girlfriend’s children are not just a necessary inconvenience. These kids are ones that should be loved and cared for in addition to someone that you are in a relationship with. Men who exhibit this quality of character are the kind that I am thoroughly impressed with. Okay, let’s continue.
Morgan would, of course, seek the help of the medical community. There would be numerous visits to the hospital when Raelynn had a seizure. Finally, Morgan would seek the help of a pediatric Neurologist. She would find one for Raelynn at an outpatient clinic for Children’s National hospital. The clinic was located in Rockville, Maryland. Once this happened, a two year effort to control the seizures would take place. Two years! The early diagnosis was that Raelynn had epilepsy. Several medications were tried but none of them would bring about a successful result. Raelynn’s seizures continued with little to no control over them. Finally, Morgan felt that enough was enough. She wanted answers as to what was going on with her daughter. It wasn’t only the seizures that were alarming to Morgan. She was also seeing regression in Raelynn’s abilities. Her speech was worsening and she was becoming very clumsy. Raelynn was constantly falling down and this had resulted in her breaking her foot in the summer of 2016. Morgan felt overwhelmed by what she was seeing and she was gripped by fear. Here is how she would put it to me, “I was terrified that the seizures were hurting her brain and she would regress more. I wanted answers for my baby and all they kept giving us was more seizure meds.”
Raelynn’s seizures would have a profound impact on Morgan’s ability to lead a normal life. For example, her ability to hold down a job was affected greatly by Raelynn’s seizures. It seemed that she would get called away from work constantly as the seizures occurred. This would necessitate that she become a full-time stay at home mom. I can only imagine how difficult it would be to go to work, knowing that you had a child at home that was suffering from seizures. How would this affect your ability to concentrate? There is no doubt that Morgan’s social life was impacted as well. The priority would, of course, be with Raelynn. Morgan would begin to receive social security disability to help with Raelynn’s needs but I am sure that there were still financial challenges for her. Having her mom’s continued help was of the greatest importance and it was necessary that Morgan move back home. In fact, Rhonda requested that Morgan move back into her home so that she could assist with Raelynn. In Morgan’s own words Rhonda and Raelynn “are inseparable”. Who could not understand how that would be the case? Even though the seizures had placed a limit on Raelynn’s speech, she could still be heard saying the word “Nana” quite frequently. That is what she calls Morgan’s mom. Way to go Nana. I am sure that the bond that you share with Raelynn is quite special!
Morgan would need this support as the seizures continued to happen. She needed answers and was not getting what she wanted. The staff at the hospital in Hagerstown had to have seen the frustration that was mounting with Morgan. This, as they were at the hospital once again with Raelynn. The medications that the Neurologist had been giving her over the course of time were not working and local doctors could not figure out what was going on. More medications were being added and the dosages increased. All of this was to no avail. On this visit, they offered the option of having Raelynn evaluated at Children’s National hospital in Washington, DC. Morgan took advantage of the opportunity by choosing this option and they would be transported there, to DC, by ambulance. Morgan and Raelynn arrived a few hours after the initial appointment began. This was all taking place in February of 2018 and it would be much more than just another simple appointment. Morgan and Raelynn would be there for almost two weeks. There would be a number of tests that were performed and these would include several EEGs and MRIs. This neurology team was on top of things and they were very knowledgeable. Children’s National is ranked among the top five children’s hospitals in the United States and Morgan would soon get the answer that she sought. This, even if it was not one that a parent would want to receive.
The doctors would include genetic testing in their search for answers because they knew that potentially, something very serious was taking place with Raelynn. I can only imagine the level of concern that Morgan had for her little princess. It must have seemed like a very long time as she waited to hear something from the doctors. The wait would come to an end and Morgan received the initial results as told to her by the neurologist. Here is what she had to say about the doctors comments, “Finally a head neurologist came to our hospital room and told us the results of her MRI. He said that the results show " brain atrophy". I had no idea what this meant until he said it meant brain shrinkage. This is when I started to get very nervous. He said we would not get the genetics testing back for a month but he was very sure it was a type of Batten disease.” The doctor would know this because of the level of knowledge that was held at this hospital. This is the type of experience that was needed.
From Despair to Help to Hope
Morgan would return home that night with Raelynn and she did what most any parent would do upon her return home. She Googled the disease so that she could be informed about what it’s impact would be if that was what Raelynn had. Any parent that researches this disease is horrified by what they read. Batten Disease is fatal and, to date, there is no cure. I am sure that Morgan was gripped with fear and deep concern as she read the details about Batten Disease. Morgan would tell me that she prayed to God, hoping that her daughter did not have Battens. It must have been very difficult to wait a month for the results of the testing. This was perhaps, one of the longest months of Morgan’s life but the time would arrive. It was in March of 2018 that the results of the genetic testing would come in. They would be made available to Raelynn’s neurologist at the outpatient clinic in Rockville and that is where Morgan would learn about the findings. Her worst fear would be confirmed as she would be told that little Raelynn did, in fact, have Battens. The genetic testing revealed that she had the CLN2 variant of Late Infantile Batten Disease. Morgan’s response to the news was understandable. She was shaken in a way that was beyond any other that had been experienced. Morgan described her response with the following words, “One nurse held me while I fell to the floor crying for almost two hours. When I was told Raelynn had Batten disease my heart felt like it was no longer in my chest. I felt an overwhelming empty feeling in my chest. It was sincere heartbreak. I cried every day for Months.”
Like with most everyone, Morgan was previously unaware of the existence of Batten Disease. All of a sudden, she was beginning a journey with Raelynn and her close family. A journey that she knew nothing about. Could you imagine what it would be like to receive the news that your child has Batten Disease? All of a sudden, there is this feeling of isolation and, at first, you don’t know where to turn. Perhaps you were told about BDSRA by a medical professional, but maybe not. Then, it is just a matter of time that you discover the very community that you are now a part of. Once you do, you gain the realization that you are no longer alone. There are people out there that know exactly what you are thinking and also what your feelings are. They not only know that, but they know what you will go through and what the challenges are that you will face. People in the Batten community are able to support each other in a way that those of us on the outside can’t because of a shared experience and a common level of understanding. These are all of the things that Morgan would find as she took her first steps in her journey with beautiful Raelynn. What is most valued by a new Batten mommy is the other Batten mommas and who could not understand that? Morgan would tell us this much with the following comment, “The support from other Batten mommas is what keeps me going half of the time. When it comes to the Batten community, when Raelynn first got diagnosed, I did not know where to turn to for answers until I found the BDSRA moms page.” The first person that would reach out to Morgan on that page would be a lady named Jennifer Medley. Jennifer was a mom to a most handsome son named Jake and he had previously been diagnosed with the same variant of Batten Disease as Raelynn. Jake would lose his battle with Battens at the age of nine. That was in 2014, after a very difficult and valiant battle with the disease. Jennifer would be available to Morgan to answer all of her questions because she chose to be there for others who might need her help. Any person who has battled, alongside of their child, remains part of the Batten community for life. They have been through the experience and the experience that is gained is valued by those who find themselves in the midst of the battle.
Morgan would find many others along the way and she would begin to form relationships that will last a lifetime. Along with people inside the Batten community, relationships are formed with people in the research and medical community. Especially those who are part of the battle against Batten Disease. Morgan would continue to ask God why He would allow her most innocent little daughter to go through this disease but she would soon receive some encouraging news. This would come from within the medical community a few months after Raelynn’s diagnosis. This, while they were at her Neurology appointment. It was at that appointment that Morgan would learn about a form of therapy that involved replacing an enzyme that was missing in Raelynn’s brain. This missing enzyme was responsible for cleaning out wastes in the brain cells and that was the source of the problem. A drug named Brineura was available and this would give Morgan some relief with the hope that it would work for Raelynn. It was a few weeks later that Morgan would receive a call from a Pharmaceutical company named BioMarin. They wanted Morgan and Raelynn to be seen by Dr. Andrea Gropman at Children’s National. Doctor Gropman is the Division Chief of Neurodevelopmental Disabilities and Neurogenetics at that hospital in Washington, DC. They all met together and it was determined that little Raelynn was a match for Brineura. Real hope for helping Morgan’s sweet girl now existed. This would all continue to develop as a date for beginning the treatment was set up at Children’s National.
Raelynn had been diagnosed in March and there would be an opportunity for Morgan and Raelynn that would take place in July of 2018. This, before the treatment started. Thanks to the support that was given by Tracy Kirby of the Batten Disease Support and Research Association (BDSRA), they would both be able to attend their first Batten conference together. Anyone that attends one of these conferences will tell you that the first one is overwhelming. There is so much going on and so many people in attendance. It is sensory overload! More than anything, there are the children and teenagers that you see and meet while you are there. So many young warriors in one place. It just does something to you to witness it for the first time. Everyone has their own way of responding and Morgan describes her reactions as she walked in the door for the first time, “When I first arrived at the conference, I was very overwhelmed by seeing the different types of Batten Disease. My first instinct was to turn around and run out the door. Instead I immediately started crying. I tried to hold back my tears but they came flowing out.”
I have heard similar comments before and I can certainly understand after witnessing it for the first time last year. This, although I could not have experienced it with the depth of feeling that a new Batten parent would. This was Morgan’s first in person encounter with the community that she was now a part of. She continued to share her feelings with the following comment, “I have never cried so much in my life as when we were down there (in Nashville). Meeting all of those families was so good for me to cope with Raelynn being diagnosed. The hardest part for me was seeing families there without their children because they had passed away.” Morgan recalls that she was assigned to the McCorkles as her buddy family because their son Micah has the same variant of Batten Disease as Raelynn. Misty McCorkle was extremely nice to Morgan, giving her guidance in finding her way around. She also provided Morgan a shoulder to cry on during the family buddy meeting. Misty was, of course, very qualified for this assignment. Another person that was a huge help to Morgan while at the conference was Hollie Beish whose son is little Conner of the Fighting For Conner Facebook page. Handsome Conner has the same Variant (CLN2) as Raelynn and he had been receiving the therapy that Raelynn was soon to begin. Not only this, but he had been receiving it where Raelynn was going to be treated. That is at Children’s National hospital. The staff at Children’s National had actually been trained to treat Conner as Hollie had previously been taking Conner all the way to Ohio every two weeks for his treatments. Raelynn would soon be the third child to get treated in the DC area, and so in that way, Conner paved the way for Miss Raelynn! Both Raelynn and Conner would soon end up receiving their enzyme replacement treatments on the same day of the week, every two weeks.
Morgan made mention of one other family and that is the Riddle family. She told me that Miss Raelynn would meet little Tayla Riddle and she described the scene that sounds so adorable with the following, “Raelynn really hit it off with Tayla when they had first seen each other. They were both in their strollers and they were reaching out for each other. It was the cutest thing to me. Then, they started having their own little Batten conversation, yelling back and forth and squealing at each other. Later on that evening, they ended up getting in the hot tub together.” These families always carry with them the experience of attending their first conference. It is one that is never forgotten. Morgan would echo this sentiment with the following words, “It was a great experience and really helped me cope. It showed me that I was not alone in dealing with this scary disease. There are other moms that I can reach out to at any time.” And still, as would be expected, the entire experience was a bit overwhelming. That time with her Batten family will always be dear to her. She had to have felt the assurance that she was no longer alone in the struggle that she was facing with Raelynn.
The trip to the conference had been an experience that brought with it a mixture of feelings and still there was anticipation for what lay ahead. Morgan had no idea what would take place in her life at the time that she had held Raelynn in her arms at the time of her birth. So many things had changed. So many things that had taken place. All of this, beyond what any parent would have expected. Raelynn would begin receiving the enzyme replacement therapy on August the 23rd of 2018. With that event brought the hope that the Brineura would make a real difference in Raelynn’s battle with Batten Disease. She has now received over twenty treatments and I think that it is safe to say that the disease’ progression has been slowed down. Hopefully, Morgan will see some small gains as others sometime see in their children. Raelynn is so loved by all who know her and it is so easy to see why that would be the case. Her huge smile is infectious and Someone like Raelynn is the type that will melt you on the inside. I am sure that was the case for those who came in contact with her during her Make-A-Wish trip. Children should not have to fight this kind of a battle but it is nice to acknowledge them when they do!
Adventure and the Journey
When it came time to make a wish, Raelynn chose Disney World in Orlando, Florida. Morgan told me that this is because her little princess is a huge fan of the Disney Princesses. She is such a fan that dressing like a princess is what she chooses on Halloween. They would make their way to Florida and would be there from the 13th to the 19th of October in 2018. They had an amazing time with all of the expenses being paid and staying at Give Kids The World Village. Food and everything was taken care of. Toys were even provided for Raelynn. Make-A-Wish is an amazing foundation and I am so happy that they exist for kids like Raelynn. She visited the Animal Kingdom and loved going on Safari rides. There were many other rides that Morgan and Raelynn went on but her favorite one was the Little Mermaid. Raelynn was kept busy with lots of activities. She loved seeing all of the Disney characters and was even tucked in by a different one every night! I find that for them to go that length for Raelynn to be so very special. The Disney parade was magical to Raelynn. She was greeted with hugs and handshakes by many of the Disney characters as they passed by. Raelynn was invited to a princess tea party at a very fancy hotel at Disney and she was gifted with a princess doll that she still has. They also went to a pirate and princess pool party, but that is not all. In addition to time spent at Disney, Morgan and Raelynn also visited Universal Studios and SeaWorld. Wow! The last day was spent unwinding at the beach. Raelynn loves playing in sand and going in the water. Fortunately, there is an abundance of both of those in Florida. The entire experience was incredibly fun for both mom and daughter and it provided them with amazing memories that could never be forgotten.
Raelynn must have felt so special as she returned from the trip and that is in fact, how she should feel. She is such an amazing little person. That is easy to see, even from the opposite side of the country. This little princess was happy but she was failing to thrive as everyone would want. This was due to the fact that she was having issues with eating and keeping weight on her little self. Everyone agreed that a feeding tube was needed and having that done was the next event in Raelynn’s journey. She would undergo the procedure in January and I can remember Morgan’s concern about seeing her little girl having another surgery. Thankfully, Raelynn did very well with it. Morgan says that her princess has started to gain weight and she is much happier now. Who wouldn’t be? We all need our nutrition. Whatever Raelynn needs, Morgan will do her best to get it done for her little warrior. This because her love for her daughter has no conditions. It is unbridled and without limit. The love that exists between these young warriors and those who care for them is something that I also love to highlight. It is always the type of love that is undying and the bond that it creates is the most amazing. Morgan said that she would travel anywhere in the world for her daughter to receive the Brineura treatments. It would be impossible for Morgan to not love someone like Raelynn just that much! This kind of extreme sentiment is shared by most any parent that has a Batten warrior in their midst.
Raelynn has a younger sister who is almost one and a half years old. Her name is Aubree and as you might guess, her and Raelynn are very close. Morgan told me that both her girls have in common the same type of personality. Aubree is full of charm and her little self is very outgoing. She runs up to friends and neighbors when she is outside and gives them a very enthusiastic greeting. This is how Morgan put it to me, “She is no where near shy. If she’s sees people out, she runs up and yells hiiiiii. It’s the cutest.” The bond between Raelynn and Aubree was almost instantaneous and I know that it grows by the day. They have so many likes and things in common but one thing that they do not have in common is Batten Disease. That is a good thing. It will be wonderful for Raelynn to have Aubree by her side as she continues to battle.
It is hard to believe that Morgan is facing these challenges at such a young age. She is being asked to warrior on along with little Raelynn and she feels that Batten Disease has turned her whole life upside down. Kids in general change our lives in a dramatic way but the challenges that she faces are beyond anything that she could have expected. Everything is now about Raelynn and her needs. That is where a person’s focus should be when we are talking about someone like Raelynn. Mentally and emotionally, Morgan is being stretched. She sacrifices because she is not able to work and she has given up an active social life. Fortunately, her mom helps her with that as she watches the grandkids on occasion so that Morgan can get out with a friend or two. Morgan describes what her life is currently like by sharing the following, “My life is crazy now from going back and forth to doctors appts 24/7, to making sure all meds and feedings are on schedule. I feel like a nurse most of the time. Being a Batten mom is very overwhelming to me especially since I am only 25 years old. I had never dreamed of being a special needs parent.” And then there is little Aubree. She is adorable, is she not? Morgan says that she feels guilty because of the fact that Raelynn requires so much attention. She worries that Aubree will eventually feel left out. I just bet that Aubree will grow to understand and I know that she will continue to be the best little sister ever! Even with all of what is going on, Morgan would not change anything about her current situation. Here is more of what she told me, “I would not change being a stay at home mom for anything in the world though. I love that I get to stay home with Raelynn and spend lots of time with her and make memories.”
There are challenges that lay in wait as Raelynn continues to battle. We need a cure for CLN2 and all of the variants of Batten Disease. I am glad that the treatment is available for these kids as CLN2, Late Infantile, is one of the most common forms of Battens. Batten parents are quick to learn everything that they can about the disease and Morgan is aware of the course the disease will take. She knows that there will be heartache and she says as much with the following, “The challenges that she (Raelynn) faces are heartbreaking for me. My biggest fear is about when she will lose her eyesight. It breaks my heart that she will have to deal with all that this disease brings. I can honestly say that I am not ready for the even worse challenges she will have to deal with, but she will not face them alone.” No, Raelynn will not go through this alone and neither will Morgan. There is an entire community, In addition to her own family, that loves her and Raelynn. Morgan says that through all of that which has happened with Raelynn, her princess has remained happy. More times than not, that is what we see in these children and young people. They are so resilient and that is a big part of the charm that they posses. Is it them or is it us? It’s them! Raelynn is amazing. This is a little more of what Morgan had to say about her, “Her smile can light up a room and she is always laughing and making others laugh around her. She could make anyone fall in love with her.”
Morgan dreamed of having a family and a stable home life with a man that she loves. She said as much with the following words, “I had always dreamed that Raelynn's father and I would stay together and get married and end up having more children together. That's always been the dream. Find someone, get married and have babies. That dream still exists.” Morgan’s plans have been interrupted by Batten Disease although something tells me that this will still happen for her. It will just take the right kind of man. One who is worthy of her and one who loves her and her two daughters unconditionally. A man who is ready to step up and help as the journey continues. How could you not love someone like Raelynn? What is this experience doing for Morgan? There certainly will be future heartbreak but what else is there in life that she won’t be able to handle as a result of this experience. She will grow as a person. There could be great things in store for her. This, as her own experience impacts the lives of others. She will be special. In fact, she already is. She’s a Batten mommy!
These kids, and others that are like them, are just the most amazing. People need to know who they are and I have taken it upon myself to help in that cause. This is what I spend my time doing and making people aware has become the reason this blog exists. Raelynn is beautiful and I am grateful to have been given the opportunity to write about her and Morgan. Such a privilege. Thanks for taking the time to read about Morgan and Raelynn!
Blogger and Advocate
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. Let it happen!
I would like to welcome to my blog Sanfilippo families, as well as, families in other MPS communities. I am grateful for every opportunity to write about those who battle an MPS disorder. This, of course, alongside their special children. This is a labor of love that is extended to each one of you! Scroll down to see MPS family titles.
Highlighting a previous blog that might interest you:
Forever Royal - The Final Version
One child in a family with a rare disease is a challenge. What if there is two? Heartbreak multiplied you pick up the cause and do your very best to make a difference. That is how a normal family becomes Forever Royal ...
Take the titles listed below and go to month and year listed in the archives.
January 2017 -
*The Story Between The Lines
February 2017 -
*I Know Just Where You Are
*My Kind Of Royalty
March 2017 -
*The Caring Type
*Face to face: A Fairy-tale
April 2017 -
*No Ordinary Love
*A Rare Friendship
May 2017 -
*Tyrell and The Rare Love Story
June 2017 -
*Seth and The Healing
July 2017 -
*Little John and The Reason
*Sands and The Scottish Princess
August 2017 -
*A Rare Kind of Devotion
*The Giggle Box
September 2017 -
*Sweet Montanna and The Status
October 2017 -
*The Blog About My Blog
November 2017 -
*Lydia, I Love You!
*Kayden And The Change In Plans
December 2017 -
*Those That Are Like Them
January 2018 -
*Nora Skye - I Know Just Where You Are
*Brock and The Priceless Memories
*Jamesy Boy and The Treatment
*The Priceless Princess From Beyond
*Forever Royal - Part One
*Forever Royal - Part Two
*That Kind of Love - Conner's Story
*What I See (She is a Butterfly)
*No Longer Alone - Kristiina's Story
*Things We've Talked About - Oscar's Story
*The Reason Why - Hannah's Story
*Kayla's Perfect Princess - Breanna's Story
*Where Do I Go From Here? - An information only blog
*Warriors Unaware - Mia and Kaleb
*Her Little Story
*Someone Like Raelynn
*Forever Royal - The Final Version
*Awfully Beautiful - The Life of Noah and Laine
*A Lifetime of Love - Tegen's Destiny
*Forever Beautiful - Gabi's Story
*The Miracle Baby - Amelia's Story
*Dylan's Life - A Small Town Story
*Princess Grace and the Challenges
*Anything for Tessa - Her Story
*Haley Bug's Battle - A Family Story
Sanfilippo Syndrome and other MPS family titles -
*The Beautiful Light of Haidyn Grace
*Any Distance Traveled - Reagan's Story
*The Missing Someone - Kiernan's Story
Archives - Use title listed above with the applicable month and year.
Highlights from the beginning of 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