“After the word TERMINAL was spoken, Jac and I heard nothing else. I
felt my heart stop! I thought there was no greater pain than what I felt when I lost my dad, but I would be so very wrong.”
~Jennifer Whitfield Vaughn~
There is a theme that I have used in the past that I wanted to make mention of here. It had to do with tragedy and the things that can come out of a tragic occurrence. Make no mistake, a disease like Battens is a tragedy and it brings with it tragic circumstances. Nobody wants or expects tragic things to take place in their life, but how we perform during those times, and some of the positives that come out of tragic times, are worth noting. The following are some that I have noticed. We often work together better in these times as we cooperate with each other more fully. We care more for one another. The things that divide often do not matter anymore. We love more deeply and even forgive others as a result of what we are going through. Strong bonds that last a lifetime can be created in times of tragedy. Although I know that we would rather gain personally from other types of circumstances, those are some of the positive byproducts that can result from a time of tragedy.
Batten Disease is just wretched. It is the type of illness that should be left for people like myself who have lived the majority of their lives. Even more so, it is something that nobody should have to endure, let alone, children. My biggest reason for continuing to write is to honor those who battle Batten Disease. I also do what I do in order to help spread awareness. Batten Disease is only one of the thousands of rare diseases that affect children. I am only able to do my own part and working in the Batten community is the part I have chosen. I run on passion and passion is what drives me to write these stories. These children are just so special. They are some of the most amazing little warriors on the planet, and their presence on this earth is something that needs to be noticed. I have heard some say that the Batten journey can be a lonely existence at times. My point of view is that it should not be. More people need to know, and more effort towards families like those who battle Battens needs to be given. These children are priceless.
How do the feelings that we have for Batten children come about? 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 a piece of your heart to these kids and their families, they come close to taking all of it! I know that I am far from alone in feeling this way. I always appreciate receiving comments from others when they help me to explain the thoughts that I am trying to convey. I found a little help this time from a person who had been intimately involved with the life of a Batten warrior. She is a home healthcare nurse who once cared for a Batten Prince named Rex and her name is Tina Emery. Let’s see what she had to say out of her own experience with Rex as we read the following, “As a pediatric nurse and a mother of three, I've cared for children with a wide variety of illnesses. I truly do care about all of ‘my kids’, but caring for a Battens child and spending time with his family has confirmed my belief that there are angels among us. I feel blessed and honored to have witnessed such selfless and unconditional love up-close and personally. I have been forever changed by watching them focus on the smiles and joy rather than the fear and devastation that comes with this diagnosis. Anyone outside of this circle would likely not understand that these words are truly heartfelt and honest. It always stuns me that the Batten children are ALWAYS beautiful and glowing with such light and love reflected in their faces!! I seriously have a soft spot in my heart for every single Batten child. Rex, our very special angel, taught me a new kind of pure love.” I appreciate Tina sharing her insight with all of us and her words are just amazing.
How Her Little Story Begins
Our next story is about a family that has grown together through facing difficult circumstances. They are a family that we might refer to as being of the blended variety, and their bonds have been created, in large part, through a rare set of circumstances. This is a story about love and forgiveness for sure. Most of what takes place is due to the life a most adorable little girl who is unaware of the impact that she has had on her family. This is her little story which is not really little at all. Is it true that you don’t have to be big in stature to make a difference in people's lives? The answer to this is apparently, yes, as that is what this little story will show us. Just like in most every case, these stories begin with a couple that want to have a family. That was the case with Jay Mayo and Jacqueline Vaughn.
They had been trying to have a child for years but they were not having any success. This would change as Jacqueline had become pregnant. This had happened once before but the pregnancy had ended with a miscarriage. That would not happen this time as the couple’s future bundle would hang in there for close to full term. They were so happy to be having a baby. Jac, as she is called by friends and family, had certain things that she wanted in a baby, and one big thing is that the baby had blue eyes. Everyone told her that would not happen but Jac felt that it was, in fact, possible. As the time was approaching for Jacqueline to give birth, she began to have issues with high blood pressure. The doctors were concerned about this and so they decided that inducing labor was necessary. It was February the 12th of 2016 that the day would arrive. Jacqueline was given the medication needed in order to induce labor, however, the drug did not work. As a result, it was decided that this baby needed to make its entrance by cesarean section.
Jayline Lee Mayo, as she was named by her parents, would make her appearance at 5:38 pm. Everyone who would cast their eyes on her would see the very same thing. Little Jayline was perfect and Jacqueline had a perfect little girl. In fact, Jayline was everything that she had ever wanted in a baby. She even had the blue eyes that most people thought were impossible for her to have. This little girl was so healthy. Jayline passed all of her initial testing and it seemed that nothing would hold her back. She had all of her fingers and toes and she was, oh so adorable. Close by at the time of Jayline’s birth was Jacqueline's mom whose name is Jennifer Vaughn. Jennifer shared her thoughts concerning what she had seen as she looked at her daughter holding her new grandchild, “When I first laid eyes on Cheeks (Jayline’s little nickname) I was in love. Her perfect little head, petit little features, brought me back to when Jac was born, which I too, struggled for years to get pregnant. Jayline absolutely took my breath away. When I watched Jac hold her for the first time, with tears in her eyes, I knew she was now complete. She finally had the one thing she had dreamed about for years.”
It would not be long after Jayline’s birth that her and Jacqueline would receive a visit from Jayline’s grandfather Bill. With him, was his current wife Tammy. Bill and Tammy would meet, and then marry in 2004, after things failed to work out between Bill and Jennifer. Tammy was ecstatic to know that there was a new grandchild in the family, and especially that the baby was a little girl. They had a granddaughter, and any female in the house would be happy that this had taken place. Especially after seeing little Cheeks (Jayline) for the first time. When it comes to the details of a divorce, I most often try to avoid anything that would create controversy. After all, these stories are about children with Batten Disease. Why get caught up in the affairs of us big people? Well you see, the little girl that this story revolves around would be responsible for bringing about healing in people’s lives. Divorce often leaves people wounded to a certain degree and that was the case in this family. Jayline would have an immediate effect on people as individuals at the beginning, and her impact on the entire family as a group would develop as the circumstances of her own life would change.
It would make sense that I mention Jayline’s grandparents as being part of her story. This because they would have a profound impact on her little life. That part of the story would begin with the marriage of Bill and Jennifer who both are Jayline’s natural grandparents. Bill Vaughn had been a career Navy enlisted man when he met Jennifer. They were married ten years before Bill had retired. I am making mention of Bill’s military service because for me it makes sense to honor him for all that he accomplished while in the Navy. Bill reached the rank of Master Chief Petty Officer (E-9) and, he was a Command Master Chief in the last assignment of his 28 year career. You do not go any further as an enlisted man in the service. Both this writer and his wife also served in the United States Navy, but both only for one enlistment. Bill achieved much while serving and in fact, more than I was allowed to mention. This writer did not achieve much while serving. I do, however, owe everything that I have accomplished in my occupation to first serving in the Navy. And so for these reasons, I really appreciate Bill’s service to this country.
It goes without saying that divorce brings hardship and hurt feelings along with the separation of two people. The subject brings with it all kinds of negative connotations and we hate to see it happen. The fact is though that it does happen at times and life has to go on when it does. Most of the time, there will be hard feelings between the former spouses although, time may help cure that. It often doesn’t though. Sometimes, people stay at complete enmity for life. You wouldn’t expect there to be a lot of love involved between an old spouse and a new one. For example, between a former wife and a current wife to the same man. Being cordial towards one another is the best that you could hope for. Animosity could be involved. There may even be anger and resentment among children when they are old enough to understand what has taken place. The list of possible effects of a divorce could be greater than those I have listed but this will suffice. After all, this story is about little Jayline. As mentioned above, Bill would remarry and that would bring Tammy into the picture as Jacqueline’s step mom, and also as one of Jayline’s grandmothers. I am sure that some of the negatives that I mentioned above were present in certain relationships within the family at the time of Jayline’s birth. All of this provides some background as we move into Jayline’s little story.
Jennifer would not be alone in her love for Jayline. The fact is though, that her love for Jayline was strong from the very beginning. Her daughter now had a daughter of her own and Jacqueline’s experience reminded Jennifer of her own as she gave birth to Jac. The bond between Jennifer and Jacqueline would only be strengthened by sharing the event with each other. Jennifer would think back to her days of raising Jacqueline as she observed her own daughter caring for Jayline. She recalled that Jacqueline would grow up to be very kind to others, and also that she would grow to be very athletic. Jennifer has two daughters and Jac’s sister is named Elizabeth. Jennifer felt that Jacqueline was a role model for others to follow. For example, they had a neighbor who had special needs and Jennifer recalled that Jac did an excellent job with handling that special person. This, when others found it difficult to do so. Jacqueline now had the possibility of watching her own daughter experience much of the same types of things that she did growing up. This, must have brought a lot of joy to Jennifer as she anticipated what the future might hold.
It would make sense that Jacqueline would want the very best for little Jayline and, although sometimes necessary, she preferred not to drop her new baby off in daycare every day as she had to work. This led her to ask Jennifer to move in with them. Jennifer remarked that she would not hesitate to take Jac up on her offer. Her things were soon packed and put in storage as she made the move. Little Jayline was only about five weeks old when Jennifer would begin helping with her care. Ironically, Jac would begin working as a supervisor for a daycare. It was very fortunate that she was provided a large apartment that was located directly above the daycare, and this is where Jayline would continue to grow in the presence of those who loved her. The bond between Jennifer and Jayline would continue to grow as little Cheeks went everywhere with grandmother. Along the way, Jacqueline decided on a career in nursing. In addition to her full time work in the daycare, she also attended nursing school full-time. This made Jennifer’s help invaluable. According to Jacqueline, Jayline was a pretty easy going baby and I am sure that helped. Jayline very quickly had the affection of Bill, Tammy, Jennifer, and everyone in the family. It is easy to see how that would be possible. Tammy had brought two children into her marriage with Bill. A daughter name Britani and her son Travis. This again, was a blended family that was still in the process of getting along with one another. Jayline would do much to help in causing things to progress in this area.
I am sure that for Jac, this all had to be a case of sensory overload. She was a new mom in a new place. She had a new job and at the same time, she was attending school three nights a week in an eighteen month program in order to become a nurse. Life was at full capacity for her at this point and her mom was there to help. Stating the fact that Jennifer adores Jayline would be an understatement. Much of her heart would be consumed by this little girl, and who could not understand that to be the case? After all, their days together would serve to strengthen the bond between them. Jacqueline, and everyone for that matter, observed that Jayline developed a love for the Mickey Mouse Club cartoons. She absolutely loved Mickey! Jac stated that Jayline was addicted to television as a baby, and that she would raise a fuss if you were to change the channel off of the Mickey Mouse Club. Tammy would put it as being at the level of obsession, and everyone would agree. Jennifer was suspecting that Jayline may have autism as early as age five months. The other thing was water. Jayline loved water. Jennifer said that water was a cure for Jayline if she was cranky or upset over something. You could put her in the tub if she was upset and that would fix things. Jayline loved to splash and she would sometimes get so tickled over it that it would cause her to fall over. Fortunately, Jennifer would be there to catch her when she did. Anytime they were near a pool Jayline, of course, wanted to be in the water. Her mom had bought her all kinds of water toys and things to help keep her safe. She would often times spend the day at Bill and Tammy’s house in the pool with her little cousin Nolan. Many precious memories were being formed.
And still, As Jayline’s development continued, those who were close to her were noticing things that were a little different. Jacqueline stated that Jayline would not explore and get into things like other children would. Less obvious was that Jayline wasn’t the best at making eye contact with people. Tammy commented, with the following, about what they were all seeing as Jayline continued to grow, “Shortly before Jayline turned one we were questioning her ability to maintain eye contact. It appeared when you called her name or tried to make eye contact with her. She would never look at you. Within a couple of months her lack of ability to pick up things, such as toys to play with, was noticed. Along with that was the fact that she never stopped to pick up little things off the floor to put in her mouth like every other baby her age. It was at that point we decided something more was going on.” The family had sister Elizabeth’s son Nolan to compare his development with that of Jayline’s. He was six months older and he and Jayline were the best little buddies. This was sweet but would also leave some people concerned with the differences that were noted.
Jayline was perhaps a little bit slower than most kids in learning to walk. Jennifer stated that she was fifteen months old before she was able to take several steps. This before she would fall, only to get back up again. She tried so hard and was so proud of herself with each success. Her gait was a little different too, as her walking resembled that of a duck instead of a toddler. People would also make note of the fact that Jayline wasn’t too interested in toys, and when she was, they were very specific ones. All of this caused Jacqueline to have her daughter evaluated by Florida’s Early Steps program. Jayline was a little over a year old when she would be evaluated and was approved to receive therapy. After working with Cheeks (Jayline) for a while it was felt that she may have something called Rett Syndrome. Much of what they were seeing would be indicative of the disorder. That was not all that the family had to contend with. It was in March of 2017 that Jayline became very ill. She had a bacterial infection in her blood that is normally only seen in the bones. Jayline would be treated successfully with antibiotics but what a scare for this family. It had to very concerning to everyone at this point that this little blue eyed darling of a girl had so much going on.
During the summer of 2017 that Jennifer would make the difficult decision to go to North Georgia, where her parents lived. There was no way that she wanted to leave Jayline and Jacqueline, but her father was very ill as he was suffering from heart failure. As a result, Jacqueline would ask if her dad and Tammy would step in and help with the care of Jayline so that she could continue to keep up with things. Jac was able to take Jayline with her to the daycare during the day, but she needed help when she attended her classes at night. Bill and Tammy would watch Jayline three nights a week while Jac continued her training. They would also watch her occasionally on the weekend upon request. Tammy loved the time that she had with Jayline as she was a perfect little person to be around. The bond between Tammy and Jacqueline would also grow at this time and who could not understand how it would? Bill and Tammy were there for Jac and Jayline when Jennifer had to be away.
It was in July of 2017 that doctors at Nemours Children’s Hospital decided to do some testing on Jayline. They wanted to do an MRI of her brain as, according to Tammy, Jayline was beginning to struggle with some of her motor skills. Jayline had learned to walk, but she did so on her tippy toes and she was falling frequently. Tammy would go on to say that the MRI would reveal some demyelination (damage to the protective covering that surrounds nerve fibers) in Jayline’s brain and they mentioned the possibility of Rett Syndrome. They recommended that Jac follow up with a geneticist but they did not have one on staff. Jacqueline would take the reins on this and called the University of Florida in Gainesville to see a geneticist that was on staff. Much to everyone's disappointment, the waiting list was huge and they were not even accepting new names at that time.
Jac would call her mom and tell her, for example, that Jayline’s eating habits were changing and that she was no longer able to feed herself. It was also in the summer of the same year that Jay and Jac had brought Jayline up to North Georgia for some time with Jennifer. This, after she had been away for two months. Her heart was broken by what she had seen after looking at how Jayline had changed. Little Jayline had digressed in her abilities and it was very noticeable. It would be in October that Jennifer would return home, telling her father that she would come back to Georgia soon. As all of this was going on, Jacqueline’s training would intensify as she had to do her clinicals for nursing. The hours that she spent at school would increase as they began to include long hours on weekends. I am certain that Jacqueline was so thankful to have the help from Tammy and her father during this time. As for Bill and Tammy, they loved the time that they had with little Jayline.
Searching For Help
Meanwhile, Tammy had been calling around to see if she could find a geneticist who could see little Jayline. She would find one at Arnold Palmer Hospital in Orlando, however, little Cheeks could not be seen until January of 2018. How discouraging! In the meantime, Jennifer had returned to Florida as Jayline’s condition had become more alarming. She would, however, soon have to return to Georgia. It was on the last day of November in 2017 that Jennifer had received word that her father was not doing well and so she left the next morning. How difficult all of this must have been to take as things were happening all at once. Her father, who was Jennifer’s best friend, would pass as she arrived. She would spend a week with her mom and then return home to Florida because of all that was going on with Jayline. Her condition had become more and more alarming. Jayline had been hospitalized a couple of times and had completely lost her ability to walk. How frightening!
It had to have been so difficult to see the changes that were taking place in this most darling little girl. All of it being compounded by the loss of Jennifer’s dad. It would be the very next day after Jennifer returned that they rushed Jayline to the hospital. Jacqueline felt that Jayline was not getting enough to eat and she would be admitted to have a feeding tube put in place. Due to complications with the tube feedings, they would spend most of December in the hospital with Jayline. While there, the staff would perform another MRI. The results of the test would be compared to the MRI that was done in July. Although the doctors did not see major changes, they were nonetheless, very concerned. During the time that all of this was taking place, a process of healing would begin to occur. Bill and Tammy had been coming to the hospital to visit every couple of days while Jayline was hospitalized and, of course, Jac and Jennifer were there. Initially, Jennifer would leave the room when Bill and Tammy were present but soon, Tammy would insist that this was not necessary. So much time had passed since the divorce had occurred. In fact, for the good of Jayline, Tammy felt that they needed to remain together. Something that I alluded to earlier was the fact that the divorce between Bill and Jennifer was not a friendly one. There was anger and resentment involved and time had not yet completely healed old wounds. This would result in awkward situations when all of the parties that were involved found themselves together.
When it comes to divorce, the circumstances can sometimes leave children angry as well. This, even if the feelings of resentment were not as severe as with the adults. Some of that had occured here with this family. It is possible that awkward feelings may have existed between children and stepchildren as well. This can happen when divorce is followed by remarriage. I know that you get the idea. There were obstacles that needed to be overcome for the good of little Jayline. Gradually, things would begin to change and it would all be, in large part, because of this little girl that everyone adored. These kids have the power to change people. It would be at the end of 2017 that Jacqueline would complete her training to become an LPN. She had succeeded even with all that was taking place with her daughter. Jennifer and Jac would be at the hospital with Jayline non-stop (Jac, for every minute she was able to be there). Tammy, out of pure kindness and concern, would offer to bring clean clothes and food to Jac and Jennifer when she was there. It was because of things like this and the circumstances faced with Jayline that the bonding process would begin with Tammy and Jennifer. Together, they would end up facing the realization that something very wrong was happening with Jayline. Both would become a tremendous means of support for Jayline’s mom, as well as, for each other. Soon, there would be no division between the two families and they would all be as one.
Reason To Heal
It seems so cruel when bad things happen during the holiday season but it is a fact that they sometimes do. It is always harder when trouble comes on the holidays and we don’t want holiday memories to include those of loss or trauma. The family had fixed up Jayline’s room at the hospital with decorations and lights and they tried to make things as festive as possible. It was the Christmas season but life did not stop for the holidays. It would be after the second MRI was performed that the doctors suggested that what was going on with Jayline was life threatening and the word “terminal” was used. They felt that it was something very serious. The doctors felt that Jayline may have a lysosomal storage disorder and they mentioned two diseases. One was Batten Disease and the other is Leukodystrophy. Rett Syndrome would soon be ruled out as a possibilty. They had not seen a lot of changes from one MRI to the other but they were pointing to the fact that Jayline had lost so many of her motor skills, and she was no longer thriving as a little girl should be.
Much of what the doctors told Jac and Jennifer was lost after the word terminal was used. Jennifer’s response to what was said by the doctors at this time was used at the beginning of this story and it is worth repeating here, “After the word TERMINAL was spoken Jac and I heard nothing else. I felt my heart stop! I thought there was no greater pain than what I felt when I lost my dad but I would be so very wrong.” The findings still needed to be verified concerning little Cheeks and her condition, but whatever was going on was very serious. There is no doubt that Tammy shared the same love for Jayline and Jac that was felt by Jennifer and the entire family. She was at home when she received a call from Jacqueline concerning what they had heard from the doctors. Here is what Tammy had to say about the call, “I will never forget that phone call from Jacqueline to me that day. She was crying almost uncontrollably and I could feel her broken heart as only a mother could when you cannot fix something for your children.”
During that call, Tammy tried to calm Jacqueline. She did so by assuring her that they would do everything that was humanly possible to help her battle what was plaguing little Jayline. Tammy and Bill would make the trip to the hospital, and it was on that drive that Tammy thought about the fact that Jennifer would be present. Together, her and Bill would have to face Jennifer for the first time since the divorce which had taken place back in 2004. As they arrived at the hospital, Jacqueline said that she would have her mother go downstairs while Bill and Tammy visited. To this, Tammy would insist that it would not be necessary to do that. She felt that as adults, they all needed to come together for Jayline, and that is what would soon happen. It was that day that the healing would really begin. More than just that, two families would begin to blend into one. The tragic circumstances that were faced by a little girl would bring about something that was very positive and life changing. This, even though she was completely unaware of how her little life was impacting those around her.
Soon, the family present would be joined by others. This included Jacqueline’s sister Elizabeth, stepsister Britani, and stepbrother Travis. Also visiting was Jacqueline’s best friend Jennie! Both Jac and Jayline felt loved but in the back of everyone’s mind, was the plight of this most adorable little girl with the huge blue eyes. Tammy had described to me the losses that had been experienced by both families in the years 2016 and 2017. These were in addition to the loss of Jennifer’s father. They would include Tammy’s mother, stepfather, and stepbrother, all to different forms of cancer. She would also lose her biological father in that timeframe. Of everything that had been experienced by these families, what they were facing with Jayline was the most difficult to understand. She was just a little girl who has her entire life in front of her. Add to this the fact that she had grown to be everyone’s little princess. The whole thing just made no sense.
The doctors in Orlando did not have a lot of information beyond what they had told the family already and they urged them to seek the help of Children’s Hospital of Philadelphia. They felt that the doctors at that hospital had the experience to be able to help. Tammy would fill out the online questionnaire immediately upon returning home and she also started doing research. The hospital would reach out to Jacqueline and they would set up an appointment for early March of 2018. As a result, the family decided to do some fundraising to help with the expense of the trip. Jennifer, Tammy, and Jacqueline would make the trip together with little Jayline but that would not happen for two months. Those were two very long months for this family to have to wait. In the meantime, they kept an appointment that had been made with a geneticist in Orlando. Once there, the doctor would only do a limited amount of testing because she didn’t want to jeopardize Jayline being accepted at the children’s hospital in Philadelphia. One thing that was concluded is that Rett Syndrome was officially ruled out as a possible diagnosis.
Jac’s Persistence and The News
The rest of life was not stopping as a result of what they were facing with Jayline and Jacqueline was encouraged to go through with her State Board exams to become a Licensed Practical Nurse. She took and passed them and she would also find employment with the County Sheriff's Office as a nurse. This was all, highly commendable with all that was taking place around her at the time. The family would also celebrate Jayline’s second Birthday in early February of 2018 as the time for the appointment was approaching. The time would then come for the three day trip out of state to Children’s Hospital of Philadelphia. This would be a long trip but it was necessary in order to find an answer as to what was going on with Jayline. Once there, doctors would perform the necessary genetic testing. They shared the fact that getting the results of the tests could take three months, or longer. This would, no doubt, seem like an eternity. They did meet with the Leukodystrophy team while there and they didn’t believe that to be Jayline’s Diagnosis. They did believe that she had something that mimicked the symptoms of one form of that disease. According to Jennifer, the team of doctors felt that what Jayline had wasn’t terminal and she would most likely receive back some of the motor skills that she had lost. The genetic testing would reveal the answer, but at the time, they would leave with a little bit of hope. As this was all taking place, Jennifer and Tammy were continuing to bond because of their shared involvement with Jayline and Jacqueline. This was, of course, a very good thing. Jayline needed this and it was good for everyone. It was the end of May that the results of the testing would be in. It would actually only take a total of two months before the findings were available.
Children’s Hospital of Philadelphia again reached out to Jacqueline as they wanted to know if the family would be willing to return to the area to review the findings. To this they, of course, said yes. It was the first week of June 2018 that they would leave to go back. I am sure that their feelings were mixed as Jac, Jennifer, and Tammy made their way back to Philadelphia. It was such a long way to travel, but they would have done anything to know what was taking place with Jayline. Going there in person would hopefully insure that they received the best, and most, information available. They again arrived safely, and as they waited in the the exam room, the family was approached by an entire team of professionals. One of which included a family counselor. The feeling at that point was not a good one. The news that was received was that little Jayline, the family princess, had CLN1, Infantile Batten Disease. That was the only thing that could have been worse than the diagnosis of Leukodystrophy. Jennifer described the response of both her and Jacqueline as they received the news, “As soon as the word “terminal” came out, Jac got up and left the room. Again, my heart stopped for not only Cheeks, but for my daughter. I’ve always been able to make things better for her when she was down, but there was nothing I could say or do to stop the pain she was feeling. I just kept thinking, how could God do this to her and my Cheeks.”
No Child Should
Jennifer’s response was completely understandable. No matter what the diagnosis is, it is tragic when the word terminal is used to describe the outcome. This is what every parent and grandparent of a child that has Batten Disease will hear. Our hearts break just reading the details but that is the reality of what these families face. Jennifer said that Tammy was the only one that was able to ask questions as a brief 45 minute meeting took place. Jennifer stated that it was as if someone had pushed a knife into her heart and it was being twisted with every answer that was given. The team shared some important details with the family and told them about a conference that was taking place in Nashville, Tennessee. It was being held in July, which was the very next month. The three women were just devastated. Who would not be after receiving this kind of news. After this, they quietly returned to the hotel.
The outcome of the search for answers was a tragic one but out of that would come something that was life changing for Tammy and Jennifer. Yes, they were faced with the devastating diagnosis, but something amazing would happen as a result. Jennifer described what happened when they had returned to the hotel with the following words, “I went downstairs to smoke and just broke down in front of the building. I didn’t think I could ever stop, and after about 20 minutes Tammy was there, and we both just cried while holding each other tightly.” Between the two of them, Jennifer and Tammy worked out any feelings of animosity that may have lingered. What had taken place in the divorce had happened many years previously, and there was no reason to hold each other at a distance any longer. Jennifer went on to describe the transformation that had taken place, “It was at this time that I knew this person would forever be a huge part of my life. We bonded like never before at that moment. I no longer felt any resistance to push her away. As Tammy says, we became family, and are referred to as sister wives but with a different meaning.” They were no longer like the current wife doing her best to get along with the ex-wife. The bond that they now shared was like that which existed between sisters, and it was formed due to the tragic circumstances that surrounded this little girl that was loved by all.
Every story that I have done has to pass what I call the “Cry Test”. What I mean by that is that I have to be moved by something that is included in the details that are sent to me by the family I am writing about. Every story has passed this test! I was so moved by what Jennifer shared with me concerning what happened between her and Tammy after they returned to the hotel. This scene, if you will allow me, is what I believe best explains the bond that had formed between these two ladies. In the process of this happening, the two families would form into one. This was all due to the effect that this little girl with the nickname of Cheeks had on all of them. Any differences that may have existed were now set aside and were forgotten.
In Their Presence
As already stated above, Jennifer and Tammy learned of a conference that was taking place in July of 2018. This would be the very next month after Jayline was diagnosed, and that is where me and Jennifer met. I had no idea, at the time, that it had been that soon since they were told that Jayline has Batten Disease. All of a sudden, they found themselves in the presence of a community that they never knew existed until they received the news. The events that led to them being there must have seemed like a whirlwind. Jennifer had told me at the time that Cheeks had impacted the family in an extra big way, but I was unaware of any of the details. She is an amazing little girl who is unaware of how her life has impacted the lives of those around her. Jacqueline was still processing everything that had occured and opted not to attend the conference but she was all for allowing Jayline to go with other family members. Bill and Tammy drove as they had wanted to visit a family member on the way to Nashville. Jennifer felt that it would be impossible to travel alone by plane with Jayline so Elizabeth and her stepsister Britani traveled alongside to help. Both, I am sure, made things much easier, and Jennifer remarked about how helpful Elizabeth was during the conference. Britani was also very helpful, attending information sessions that conflicted with ones attended by the rest of the Vaughn family. It was an emotional time and a little overwhelming to these newly minted members of the Batten community. Jennifer described, with the following, what she had seen and experienced as they got to the conference, “ I won’t lie, when we arrived at the hotel, many of the families and children were in the lobby and I was immediately overwhelmed with grief for all these children. Children that at one time came across as normal kids. Walking, talking, playing sports and driving their parents crazy only to end up losing the abilities to do the things they once loved. I just stood there with tears flowing down my face.”
Jennifer continued to talk about the effect that seeing all of these kids at the conference had on them as a family. In doing so, she would include mentioning a very special young man that they would meet. Here is what she had to say, “I think Bill and I cried the most during this trip, just seeing all these kids that had lost so much, but still seemed so happy and still able to smile. But one young man stole our hearts when he wanted to meet Cheeks. His mom rolled him over to her, and not sure what he was about to do, he reached his hand out and gently held Cheeks hand pulling it towards him to kiss it. He fell in love with her and we did him. This special young man that had stolen our hearts was Jacoby.” While there, everyone gathered as much information as they could about the challenges that lay ahead, and also how to best cope with them. They also learned about a clinical trial for CLN1 Battens that was becoming available the following year. I was there, personally, in order to see for myself what takes place at a conference, and to get to know the people in the Batten community a little better. I found my first time there to be a little overwhelming, and I was just a spectator. I can only imagine what it had to have been like for this family. I am so glad that me and Jennifer were able to meet one another!
Jayline is beautiful and it is very fitting that she was given the nickname of Cheeks. That is one of the first things that you notice when you first see her. The other thing is her deep blue eyes. She is absolutely angelic looking and she steals your heart without even trying to do so. She has affected the lives of her family like no one else could and it is no wonder that she has. Feelings must be a mixture of heartbreak for what you know is taking place in her little body and the profound love that will always be felt for her. She melts you inside even, in my case, from the opposite corner of the country. It is heartbreaking for any parent or grandparent to witness the changes that take place in a child that has Batten Disease. One of the changes that has taken place in Jaylene has to do with her eyesight. Jennifer described what happened and also the heartbreak of knowing what had taken place. This is what she had to say while giving us some context, “She (Jayline) almost always sleeps with me and, after giving her meds to help her sleep, I never had a problem putting her to sleep in bed before I went, but suddenly she would no longer stay in there alone. Not only that but she would have to hold my finger until she fell asleep. If you put her anywhere that was quiet she would cry. We started to believe she had lost her vision and was scared. I mean, anyone would be. What must have been going through her little mind? Was she thinking mommy or nana had turned the lights off and would never turn them back on again? You could see her looking around trying to see something, anything. My heart broke for her. I wanted to give her my eyes. I wanted her to still be able to enjoy her favorite movie that had played for months all day everyday....Moana.”
How terribly upsetting this would be to experience. Not only for the child but also for the family. An immense amount of love, mingled with heartache. What is so amazing with these children is how they respond by adjusting to the new normal that is their life. Laughter can still be heard coming from Jayline as the family does everything that they can to help her to experience the joy of living. Their mission is to help her battle while also helping her to experience life to the fullest. She knows that she is loved because that is, in fact, an understatement. Adored may not even be strong enough of a term. She is loved by everyone that knows her and she is no doubt, smothered with attention. And again, without knowing, she has changed the people around her for the better, even if the change is brought about while experiencing the tragedy that is Batten Disease. This angelic little girl is oh, so special!
It is beautiful to consider the good things that have taken place as a result of Jayline coming to this family. Certainly, this little girl with the very fitting nickname of Cheeks has done much in the short time that she has been on this planet. What about Jacqueline, her mom? This is a young lady that dreamed about having a baby and who had specific things in mind for what she wanted in a child. Jayline met all the expectations that Jac had for her but she has brought challenges that no one could have expected. Without thinking through all of the specifics, you just know that this mom looked forward to all of the events that would take place in the life of her daughter. Heartbroken is the word that comes to mind most when I think about what her response to the diagnoses must be. We need a treatment and a cure for Batten Disease so that young moms (and dads) have hope when given this news. I know that Jac has received tons of support from her family. The fact that she was able to complete her training to become a nurse testifies to that fact. How will the experience of being Jayline’s mommy impact the quality of care that she provides for those she cares for as a nurse. Maybe she will be kinder and more caring as a result. Maybe more patient and empathetic. I am sure that friends and family will benefit from what little Jayline teaches her about how to love more deeply. This may also be evident as she provides care to her patients even if they are unaware of where all of her experience comes from. Jacqueline has a big future in front of her even if there are to be challenges along the way.
And again, there is Tammy and Jennifer. I asked a couple of different people (locally and outside of the Batten community) if they felt that the relationship that exists between these two ladies is extraordinary. They both agreed that what has occured between Jennifer and Tammy is extra special. Jennifer described the relationship that exists between the two of them and also what there days are like as a result, “Tammy has become my best friend, my sister, my confidant, and the one person I know where I can drop the happy smile and breakdown without judgement. She’s my PERSON. We have family gatherings often. Some are scheduled, others on a whim. We are the ones that always take Jayline to her Doctor that we referred to as our Batten specialist. The one that we are always late getting to, Lol. Afterwards it’s a girls day with Cheeks full of eating out, Starbucks, and shopping.” Jennifer is having to be away once again in Georgia. This is due to her mom needing extra attention. Having Tammy there to give Jayline the care she needs when Jacqueline is at work gives Jennifer peace of mind. This even though she misses little Cheeks terribly. The two of them share a bond that goes back to the very beginning of Jaylines life.
All three of the Vaughn grandparents consider themselves to be more than just cordial to one another. The three of them are more than just friends, they are family. They came together for, and as a result of, little Jayline. I am sure that life is so much better now. Jennifer said as much as she shared the following which is completely transparent, “Before Bill, Tammy and I decided to let go of the past I was full of dislike and jealousy towards them. I never realized how much energy I was wasting and how it added so much unnecessary stress to both of my girls. Now, I can’t imagine them not being in my life.” Does this kind of thing really happen. YES it does, but in this case, it took a little girl that everyone adores. Her impact on this family will always be felt, even if her time on this planet is cut short. The fact that she will always be present in that way is a a very special thing. She is angelic and she will always be that! This is now one big family and my desire is that they would continue to see each other through the challenges of life. I just bet that they will. Was Jayline sent to accomplish this in her family?
I have to repeat the question that was asked at the beginning of this story concerning kids with Batten Disease. Once again, 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 that both are true. It is heartbreaking to see a child suffering from Batten Disease. That is an understatement if that child is a member of your family. Undying love and a bond that can never be broken. Once you give a little a piece of your heart to these kids, they come close to taking all of it. Ask Jennifer. Ask Bill, or any of the others! It is them but they also produce feelings in us that no others can. They reveal to us that indomitable human spirit that can exist in spite of difficult circumstances. Their laughter can be heard until they are no longer able. Their strength is clearly seen and will always be remembered. Show us much more Jayline, for many more days to come. This is her little story. It’s not really little at all. Is it?
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