“It took almost 13 years for an accurate diagnosis. I even quit my job to travel the state finding answers and to give it my all advocating for her education. I was persistent…her teacher was persistent and yet still, everyone missed it.”
~Veronica Poe Brewer~
Brynn’s Mom and Advocate
I hope that you will bear with me. I often start stories concerning families that battle by drawing a comparison. That is between their stories and that of my own family. I can only attempt to do this because we have a son at our house that came into this world having special needs. I’ve joked in the past that while trying for a girl with our third child, we got a Benjamin instead. It all began with two people who were enlisted in the Navy and who were stationed together at the Naval Air Station New Orleans in a small town named Belle Chasse in Louisiana. My wife to be was from Oregon and me, I was from California. There we were in the deep South where we met and fell in love. We were inseparable from the start and would marry in 1981, finding our first apartment in a town nearby named Gretna. We had so much fun together at that time and great memories were formed. We would find our way back to the west coast about half way through my wife’s enlistment and would one day start our family. Our first son was born in a big Navy town named San Diego and son number two was born near my hometown of San Jose, in a smaller city named Gilroy. It was during our engagement to one another back in Belle Chasse that we discussed having kids and it was around that time that my wife to be informed me about her family history. That history included the fact that there were people on her mother’s side of the family that had an unknown syndrome of some type. In other words, there were family members that had special needs and it was possible that we might experience something like that as our own children came into the world.
The possibility of that happening never influenced any of our decisions as we moved forward with our marriage or plans for having children. As well, the thought of having a son or daughter with special needs never entered my thinking as time moved forward. Maybe I was lulled to sleep by the fact that our first two boys were healthy and normal and we wanted that baby girl next. We would instead have another son. I should have expected that special circumstances may become part of our lives but I never did. We knew almost immediately that Benjamin was different. All of his milestones were a struggle to meet and he was sick frequently. Then came the seizures and they were of the grand-mal type to begin with. There were all of the struggles that came with dealing with doctors and the medical system. Things like getting approval from our insurance for equipment that was needed. Sometimes the problem originated with the doctor that we were dealing with. My sweet wife was the one at home and the one that had to deal with the endless phone calls and frustration. We would eventually make our way to see a geneticist but genetics was not yet where it is today. It wouldn’t be until age 31 that Benjamin would receive a diagnosis. We now know that he has a disorder named PACS2 syndrome. Benjamin’s disorder is ultra-rare but it is not necessarily fatal. I have left out many of the details because I don’t want to make this story about us. Let me just say as I finish that having Benjamin in our lives is a joyful experience. I also want people to know that we understand much of what families of children with a rare disease go through. There is no way that we can understand entirely though. We have experienced much over the years but the struggles that we have faced pail in comparison to the things that are experienced by a family that battles alongside a young warrior.
We knew why Benjamin was not meeting his milestones and why it is that he is developmentally delayed. However, the parents of a child that unknowingly has a lysosomal storage disorder (like Batten disease) is taken completely by surprise. That is once their child starts showing symptoms of a disease that most know nothing about. All of the joy associated with seeing a child reach their developmental milestones is experienced and the future looks to be nothing but bright. Things then begin to go terribly wrong and the question as to why this is happening has to be answered. Concerns and tensions grow as all of this is taking place. An answer is sometimes found quickly but oftentimes it is not. In some cases, the real truth is not known for years. Perhaps a series of false diagnoses can be given over time while hope is given or taken away with each one. All that the parent is looking for is to know what is taking place with their child and what it is that they are facing as a family. In a traditional home, a great deal of stress and anxiety will fall on a mom who would do anything to help the son or daughter that she brought into the world. Eventually, the truth is found out and the news that brings sadness and great dismay is conveyed to the family. Hope is exchanged for hopelessness and grieving begins for someone that is still with you. Love mixed with grief is a profound type of love and it can become a love that hurts. I was made aware of the kids that battle through the knowledge of one little girl who battled Batten disease. As a result, I was taken almost immediately with the details of what is experienced by these children and their families.
So resilient are these young warriors, each adapting to the changes that take place within them. Their smiles will light up a room no matter what it is that they have been through. In the parents I see hopelessness being replaced with a will to fight alongside their child. Anything within their power will be done in order to help. There is a bond that is formed that is stronger than any other. These families will experience far more than we have ever seen or can know about. Strength that had never been seen before is revealed because this is what the battle that is Batten disease requires. What I have written so far has been included purposely as I begin this next story. With that, I won’t take any more time in getting started. This story starts with a young mom named Veronica Poe. As a young girl growing up, Veronica would live in a few different places. Living in Texas, California, and Louisiana all contributed to her childhood experiences. This was because of the fact that she was a military brat as a youth. Her mom Debbie was enlisted in the Navy and she would continue her service for a full 30 years. She would reach the rank of E-9, becoming a Command Master Chief Petty Officer. This was at the Naval Air Station New Orleans in Belle Chasse, Louisiana, the place that she would eventually retire from. Does Belle Chasse sound familiar at this point in the story? Veronica would attend Belle Chasse High School and this small town would become this family’s permanent home after her mom’s retirement. Life goes on and things change as life always does.
Veronica would soon find herself among the working class of Louisiana, living and enjoying life. It happened that she would meet someone one day and this would be a person who would impact the events of her future. This would take place while she was working as a bartender at a place named the New Orleans Original Daiquiris in Belle Chasse. A young guy named Brenton Boudreaux would frequent the place where Veronica worked and they would hit it off together. Brenton would come in and make Veronica roses using the paper napkins and things would begin to spark between the two of them. They would spend some time together and one thing would lead to another, as is sometimes the case. Veronica would soon be expecting a child. A lasting relationship between her and Brenton would fail to develop but having a baby would take place in the near future. Veronica would carry with her a mixture of feelings. She was excited but also thoughtful about how having a child would impact her life at this time. Things would go well with her pregnancy and she would carry her baby full term. The baby would be delivered naturally but the labor would be induced. Veronica would give birth to a beautiful baby girl on August the 11th of 2007 and she was so perfect in appearance. It was also true that her baby girl would be given the most beautiful name, that being Brynn Taylor Poe. She was 7 pounds, 9 ounces, and 22 inches in length at birth and baby Brynn was pure perfection. The big event would take place at Meadowcrest Hospital in Gretna, Louisiana. It’s now known as Oschner Hospital - Westbank campus.
Love at First Sight
For Veronica, the experience of bringing baby Brynn into the world was just like you would expect it to be. This is what she would tell me when asked what it was like to see her infant daughter for the first time, “It was love at first sight. I have never believed in that saying until I had her. I never imagined loving someone so much and so instantly.” Brynn was beautiful and perfect from the start and her development would exceed expectations. Veronica would begin to raise Brynn as a single mom and she had no idea what life would bring her way. She would just put one foot in front of the other, as people say. Baby Brynn would, of course, be her complete focus to a large degree but Veronica would soon meet someone that would change everything. She had actually met Jacob Brewer at the swimming pool on base when they were both young teenagers and Veronica was in middle school. He did not know this at the time but Veronica had the biggest crush on Jacob. They were both military brats growing up and Jacob himself would enter the service at 18 years of age. They would never speak again until finding each other and getting reacquainted on Facebook when Jacob was stationed in Colorado. The relationship between Brynn and Jacob would take off along with the one that developed between him and little Brynn. Veronica would tell me that Brynn would call Jacob, “My Jacob”, and she would one day refer to him as Daddy as the couple’s status together changed. Sadly, Brynn’s biological father Brenton would pass from this life later, during her 4th grade year. Along the way, Brenton’s family had stayed involved in Brynn’s life and they have remained involved with her until this day. This was special and is still greatly appreciated.
Together, Jacob and Veronica’s love for one another would grow and Brynn was not a hindrance to that. Rather, she was part of the whole that would make them a family. Jacob and Veronica were slow to marry and this was on purpose. That was because Jacob had experienced two different failed relationships that ended in divorce. It was their plan therefore, to wait and make sure that their relationship was one that would last. More than lasting, their relationship would flourish. Veronica remembers that it was New Year’s Eve of 2010 that their relationship began. The two of them would be engaged by June of 2013 and they would become man and wife in January of the following year. Brynn’s desire to see Veronica and Jacob marry would have a lot to do with the timing of their wedding. (You will learn more as you continue to read). As time moved on, Jacob and Veronica would add to the flock two siblings for Brynn, a sister and a brother. Bristol is now 11 years old and brother Hudson is 9 years of age. Brynn also has another sister named Aidyn. She is actually Brynn’s older sister through their biological father Brenton. I guess you could say that all together, they would become a blended family and they were a happy one at that. I’ve gone ahead in the story so let’s go back a ways in order to continue with Brynn. Everyone was always amazed with Brynn’s strength and ability as a young girl. She could do sit-ups and push-ups, keeping up with those that were much older than she was. When it came to climbing, she could scale most anything in her line of sight. That being ropes, trees, and walls. Really, anything according to Veronica.
She would also grow to be a strong swimmer and Brynn loved bikes and scooters. You get the idea. She had great potential as she grew. The world seemed wide open to her from a very young age. Brynn started school early, at age 4. She started Kindergarten at that time because of the cutoff date and how her Birthday fell. Still, Brynn was ready because she was advanced for her age. Life should be pretty carefree at that age and it usually is but a situation would soon develop with Brynn shortly after turning 5 years old. This would happen as she was beginning her time in public education. Veronica shared
that it is required that each child go to their primary care doctor prior to the beginning of school. This was in order to have their vision and hearing checked. They were also to receive any vaccines that are required. As would be expected, Brynn would pass her exam in August and would start Kindergarten. All would start well for little Brynn but there would then be a serious development in regards to her vision. As was the case with all students, Brynn would have her vision tested again a few months later and this time, she would fail the test. How could that be? Veronica thought it strange that her daughter had failed a vision test so quickly after passing and would take Brynn back to see her primary care doctor. Once there, in fact, Brynn would again fail the vision test and she would be referred to an ophthalmologist. As one might guess, she would be given a prescription for glasses and Brynn would return to school.
It would only take 2 or 3 weeks for Veronica to hear back from Brynn’s teacher and the news wasn’t good. Veronica said that the teacher was adamant that something was wrong with the prescription. There would be additional prescription changes with each one being stronger than the one before. At one point, it would be assumed by the ophthalmologist that Brynn was not being honest about what she could and could not see. That kind of assumption by a doctor would upset any parent. The search for the root cause of Brynn’s vision issues needed to be determined. Veronica would take her daughter to many different retina specialists throughout the state of Louisiana. There would be no limit to the effort put forth by Veronica in looking for answers, even quitting her job in order to travel the state. Doctors found it difficult to diagnose Brynn correctly in the beginning. As well, Veronica finds it difficult to remember at what age different diagnoses were given. Brynn struggled in school. Early on, for example, she would jumble together different pieces of nursery rhymes. Brynn would be brought to the Sylvan Learning Center in hopes of helping her with her education. She also had issues with her speech. Brynn would be diagnosed with Attention-deficit hyper activity disorder (ADHD) at one point but this would show itself to be incorrect. She was also diagnosed with Auditory Processing Disorder. What about her vision issues? Perhaps that was affecting everything else. Along the way, Brynn would be said to have congenital night blindness but that diagnosis was not comprehensive enough to explain everything.
The condition that finally showed itself to be a reasonable answer was Stargardt disease. According to the National Eye Institute, “Stargardt disease is a rare genetic eye disease that happens when fatty material builds up on the macula. This is a small part of the retina needed for sharp, central vision. Vision loss usually starts in childhood but some people with Stargardt disease don’t start to lose their vision until they’re adults.” The institute goes on to say that there is no treatment for Stargardt but vision rehabilitation can help people make the most of the vision that a person is left with. That was thought to be a person like Brynn and Stargardt disease would be her diagnosis for several years. Helping Brynn with using her remaining vision would become Veronica’s focus. Being legally blind would certainly be a hindrance for Brynn as she advanced into adulthood. However, it was something that she would adjust to in life with help from family, friends, and various professionals. Brynn Taylor Poe was a jewel of a young lady and people within her school and community really wanted to help in whatever way that they could. Her family would find something in the way of technology. There was a special type of glasses that would become available to them but they were costly in price. These glasses were being produced by a company named eSight Eyewear out of Toronto Canada. The glasses were being produced for people having various types of vision disorders. These conditions included macular degeneration, diabetic retinopathy, and, like Brynn, Stargardt disease.
Of course, it first had to be determined that the glasses worked before the funds could be raised. Brynn and family would have to fly to Colorado in order to try the glasses out, making sure that they worked. It would turn out to be worth the trip as the glasses did show a lot of potential once they were there. While in Colorado, they would make short video clips of Brynn using the glasses to show to prospective donors. They wanted them to know that they would in fact work. Having these glasses for Brynn would be a big step in the right direction. The glasses, which may be considered as being a device or apparatus, were very expensive. The price was around $15,000 and that is where the family would enlist the help of the community. Brynn’s grandmother Debbie would become the driving force in the fundraising effort, raising nearly $10,000 through various methods and avenues. The remainder of the funds would be raised by some of Brynn’s extended family. They are the owners of Salvo’s Seafood in Belle Chasse. The outpouring of support for Brynn was exceptional and the goal of purchasing these glasses for her would be met. Brynn would receive this special device as a gift on Christmas of 2014. She was then, 7 years of age. Initially, the glasses showed great promise. They were making a difference as they helped Brynn make use of her limited vision. There had to be a measure of guarded optimism as they watched Brynn open the glasses at Christmas. Veronica would naturally watch Brynn’s vision as she trained with the glasses and used them successfully. This would take place for a short time but then changes would be noticed.
Brynn’s vision would decline to a large degree. Her color vision, central vision, and night vision were already gone. All of this was concerning, although the greatest concern perhaps was the loss of peripheral vision in one of her eyes. This would render the glasses as being useless and it meant that Stargardt’s disease was not the right diagnosis. Veronica would credit the use of the eSight glasses as having helped them in noticing the decline in Brynn’s eyesight. Breaking this news to those who had donated toward the glasses would only add to the difficulty and frustration. Veronica would soon bring Brynn back to a retina specialist where more testing would take place. New ERG testing (Electroretinography) would be performed and the results would be compared to other tests performed over the previous 3 years. At one point, it was explained that Stargardt’s and Rod-Cone started out in a similar fashion. Brynn would now be officially diagnosed as having Rod-Cone Dystrophy. With Stargardt’s, there had been advancements in science and the use of technology. This was not the case with Rod-Cone Dystrophy. This diagnosis meant only eventual, complete blindness. Veronica was obviously heartbroken over this development. There was no way that this mamma could fix this problem for her daughter. It was now 2016 and Brynn was approaching her 9th birthday as this development took place. What else is there that could be done at this point, other than help Brynn adapt to each new normal that she would experience. Yes, Brynn would have some special needs with being blind but her life could still be fulfilling.
This would certainly shape her character as a person. It would also place some extra challenges with her family but the aftermath of Rod-Cone Dystrophy was something that they could all live with. And still, being able to see was one of Brynn’s deepest desires. Who wouldn’t be able to understand that? There was also nothing greater that Veronica would want for her daughter but that she had her vision back, even if only in part. The potential for a clinical trial was something that Veronica and family hoped for. Perhaps there was something out there that was available to help Brynn. Veronica and Brynn would talk. Brynn talked as Veronica listened and this is part of what they would discuss, “….my daughter expressed how badly she would love to see again. We discussed taking some more genetic testing in order to be a candidate for a clinical trial. I reminded her that the eye disease that we thought she had was extremely rare and although I was hopeful, it will more than likely not happen in her lifetime. But, by participating in a clinical trial and allowing scientist to study her, it could help another child just like her and she said that she wanted to help someone else.” Veronica would follow through on what she had told Brynn she would do. That was to have more testing done on Brynn. Her goal was to help her daughter by finding answers through the help of genetic testing. Was there a form of treatment that was available through a clinical trial? That was the hope. Perhaps something would come available in the future that Brynn would benefit from. It was now February of 2020. Brynn was 12 years old at the time the world was getting ready to shut down because of Covid-19.
The pending pandemic however, was not the most important thing on Veronica’s mind. She instead had taken Brynn in for lab samples, both in the form of a blood draw and Saliva swab. The test had been ordered and mailed to Brynn’s primary care physician and the company that was doing the testing would allow Veronica to set up an account. This was in order to follow the progress of lab work as it moved through the various stages of the process. Veronica had heard that the testing that was ordered could look for defects in over 200 genes which could cause vision loss. Her hope was that the gene responsible for Brynn’s vision issues would be found. Then also that a clinical trial was either present or would soon be available. It can often take several weeks or even months to receive the results from genetic testing. Veronica would wait but would check routinely for the results to say “Ready”. The days would move along, one after another, and Veronica would remain hopeful. That being that this would benefit Brynn’s future in some way. The day that she had been waiting for would arrive as June of 2020 was coming to a close. That day, the 29th of June, Veronica will never forget. She shared that it was about 7pm that she had received a notification. Something had changed so she logged into the account for the genetic company. The results of the testing were in! Veronica shared her response after her initial glance at the results, “I immediately smiled so big and exclaimed ‘Yes!’ I was so excited that they had found something and that my girl would get a shot at a clinical trial since we now knew which gene was causing the vision loss.” The results of the testing were not sent to Brynn’s primary care doctor to be read to Veronica in the doctor’s presence.
Instead of that, they were sent directly to her and they were now in plain view for Veronica to read for herself. The hope that she once had would quickly turn to shock and great dismay. Here is part of what she shared, “The test results used these words, CLN3, homozygous, and Pathogenic. So I googled CLN3 and read the words rare, genetic, degenerative, and fatal. At that moment I began hyperventilating….”. With that, all hope had turned to hopelessness and Veronica was there in that moment, alone to process everything on her own. She should have had the news shared with her by a physician, face to face. Veronica could see the events of her daughter’s life pass through her mind and she knew that the diagnosis fit Brynn’s situation. She called her mom, crying and hyperventilating. She was doing so to the point that Debbie could not understand what was being said. Once her mom could make out what was being said, she urged Veronica to print out the results and go to the doctor the very next day. Debbie insisted that Brynn was probably just a carrier of the disease. This was no doubt, said to give hope back to Veronica but perhaps, because it was what she was hoping for herself. Veronica shared what would take place as she awoke the following day, “The next morning I didn't have an appointment but I brought that test to my daughter’s pediatrician’s office and said I need to speak with her doctor now. I had been crying a lot so maybe it was the look on my face or the pain in my eyes but the lady at the desk took me straight back and put me in a room with no child in tow.”
Journey Not Expected
With that, Veronica’s favorite pediatrician from the office made her entrance into the room. Veronica wanted to know, was her daughter just a carrier or did she actually have this disease which was fatal? The doctor would look at the results and she would confirm the findings. Brynn did in fact, have CLN3 Batten disease. Veronica fails to recall much of the conversation after that. She does remember that the doctor shared that there wasn’t a treatment available. Only perhaps a clinical trial. That is if one was available. With tear stained cheeks, Veronica did her best to hide the pain that she was feeling. In turn, Brynn’s pediatrician did her best to comfort Veronica with hugs and much sympathy. She would do what she could, making any referral necessary at the Oschner main campus. The doctor wanted Veronica to get the help and information that she needed for Brynn. After 5 hours at the doctor’s office, Veronica walked slowly to her SUV. That is when she saw her sister walk up to meet her. They sat there together and cried before finally returning home. Taken along with other information from a Facebook post, Veronica had written this right after the diagnosis, “I have felt all different kinds of pain, but this was a pain I never imagined to be feeling. Losing a child piece by piece and trying to pretend everything’s okay when you’re just one small moment from breaking down. Enjoying the little things as they are taken away from you. Knowing what the future is most likely going to be but always being in shock when the next bad thing happens.” She knew, almost from first receiving the diagnosis, what she and her family were facing together. Then, as it is now, the hope is that help in the form of cure would soon be found.
Veronica, Jacob, and their family had entered a world that most know nothing about. A world they were previously unaware of. They had been right in the middle of the circumstances without knowing it because everyone had missed it. That includes the people that made up their local and state medical communities. It took 13 years to find the answer and it was not at all what they had expected. The first year after the diagnosis was the roughest for Veronica as she adjusted to the new normal that came with this knowledge. More than ever, she was heavily burdened as she grieved for her daughter. Many were the days spent with tear filled eyes as she gave thought to what the future held for Brynn and all of them as a family. It may be incorrect to say that a person will adjust to the battle that is Batten disease. You just move ahead, one step at a time, one day at a time. This is because there is no other choice. Life was forever changed and more than ever, Veronica had to advocate for her daughter, helping Brynn in the ways that she could. Taking breaths of fresh air, Veronica moved forward with the help of her family and friends. Batten disease is rare, occuring in 2 to 4 newborns for every 100,000 births in the United States. The majority of doctors that Veronica would talk to had never heard of the disease. Some had vaguely remembered hearing something about it in medical school but most had not. This would include some neurologists. Veronica would find that there are very few that know about Batten and even fewer that are experts on the disease in the medical community.
This would require help from outside of the state and Veronica would enlist the help of Dr. Gary Clark of Texas Children’s hospital. He would become Brynn’s main specialist and Veronica’s go to person for things related to Batten disease. Most doctors are empathetic and compassionate once they learn about Brynn’s plight and what it entails. Veronica did share a time in which one event created friction between her and a doctor treating Brynn. She shared, “A little over a year ago, my daughter had a major seizure that required her rescue drug to be administered and it resulted in a trip to the ER. I remember asking the ER doctor to please reach out to her specialist in Texas for guidance because he makes himself readily available to his patients. Especially in ER circumstances.” Veronica shared that the doctor did a great job in stabilizing Brynn but that she was also highly offended by Veronica’s request. This was even though she was just doing her job as Brynn’s mom and guardian. There is no book on raising a child with special needs, especially a rare child like Brynn. Veronica wishes she had more to draw from in this way. She shared, “I do wish that there was a manual for this rare life that included things like how to ask your ER doctor to consult your specialist….” How do you tell a doctor that they may need some help in that type of a situation? Either way, no offense should have been taken by the doctor. Brynn received her final diagnosis during the pandemic and as one might guess, that made things extra difficult. It would be understandable that there would be a lot of appointments that would come with the knowledge that she had Batten disease.
There would be many tests in various departments, however, only one parent could be by Brynn’s side because of the rules associated with Covid-19. Veronica shared what they had hoped for and also what would actually take place, “Our plan had originally been for both of us parents to go so one of us could wait in the waiting room with Brynn for the time to talk about the big stuff. I had to ask their nurses or a secretary to take her out of the room somewhere so we could talk. It felt awful for us both to not be able to be there together. It wasn’t like we were coming in for the common cold.” As a couple, Jacob and Veronica want to decide what information they share with Brynn and when to do it. It was therefore important to them to not have Brynn present when discussing her diagnosis with doctors. Covid was never as great of a concern to this family as was Batten disease and CLN3 Batten remains the most difficult issue for them. Dealing with a rare disease like Batten can isolate a family from others. Certainly, knowing the plight of a Batten family can create feelings of empathy in all of us. However, for them it helps knowing people who have had, or still do have, experience with the same set of circumstances. Just as one would expect, discovering the Batten community at large was impactful for Veronica and her family. Knowing people who have walked in your shoes is so important because you know that they are able to be there for you in ways that others cannot be. Veronica addressed the Batten community in a post done for the BDSRA (Batten Disease Support and Research Association) after the first year of dealing with Batten.
Here is some of what she had to say, “When things like this happen, you truly learn who stands in your corner and who will be there to help you navigate the broken road. I appreciate you more than I can express through words. Over this past year, there were moments I wanted to quit but somehow managed to find the strength to keep going. I struggled with my faith a lot…” This is certainly understandable. In another place, Veronica writes, “I am thankful for all the support I have. I know that without it I would be in a bad place. I am grateful for my family and wonderful friends that have been supportive. Even more, grateful for finding a community of families that understand this pain. (Even though I wish it wasn’t for the reasons it was found). Batten Disease has hurt me in more ways than I can count. But I am also a better person these days.” Difficult circumstances sometimes make us stronger if we don’t succumb to them. Veronica would overcome much through the help of a network of people that she found herself surrounded by. This network consisted of a loving husband and family, good friends, and now….family that she didn’t previously know about. That being the families that make up the Batten community. This writer has attended two Batten family conferences. One was in Nashville and one was in Denver, Colorado. These conferences can seem overwhelming when you are new to them. However, when you are parents of a child that has been diagnosed with Batten, attending these conferences are valuable beyond measure. They are extraordinarily special.
Meeting Face to Face
To be face to face with these families and to meet these kids who are so special, it’s an experience never forgotten. And to each other, these families become kin to one another because family is not always in accordance with a bloodline. There is a bond created because of a type of experience that is shared and that bond is strengthened by being together in person. Brynn and her family would attend their first Batten conference in the summer of 2023. Veronica stated that it was an experience that was desperately needed as she had been holding on to an immense amount of pain for many years. Attending helped her to learn how to release it. She was given a sense of community and gained the family that I have already talked about. Veronica and her family were loved and they received understanding by people who have walked in their shoes. She received a lot of help in the way of resources and education as well. Veronica would voluntarily participate in an exercise while being filmed. It started with her choosing a word to describe her Batten journey and it took place as the camera was running. Once she started to talk, all of the words came running out as she opened herself up to the interview. This was the first time that she had opened up in this way while allowing herself to feel the emotions. She chose the word “nightmare” and then elaborated on it. Such a simple exercise but she shared that it was impactful for her to describe the experience in front of others. To say that this was therapeutic for her would be an understatement. The conference staff obviously knew what they were doing. In fact, it was major therapy for her. There was another burden that was lifted in part by them being at the conference with other parents. Veronica had been struggling with the question of whether or not to share Brynn’s condition with her other children.
What do you do in such a case? Veronica’s initial response was that she had wanted to shield her kids from the pain that she had felt with Brynn’s diagnosis. How much more difficult would it be for her children to know their sister’s plight? She would discuss this issue with a couple of people who are members of the BDSRA staff. John and Jeni are both surviving siblings of affected children. They would assure her, the best thing for everyone was that she shared Brynn’s diagnosis with all three of the other kids. The thing is that they would find out eventually anyhow. What would it have been like if they had found the information through a Google search, i.e., after seeing it on a shirt or a piece of paper. They would be hurt even worse knowing that the information had been withheld from them intentionally. The BDSRA has an excellent program for the siblings of Batten kids and all of the children in this family would be able to benefit from this. So, through all that was presented to her, Veronica would be put at ease. She would also be given the insight that she needed for knowing how to break the news to everyone. Veronica was able to work out another issue and that was her concerns about surviving such a horrible experience such as Batten disease. She shared this with me, “I met a lot of bereaved parents there. I got to know quite a few of them throughout the conference and I had asked how do you come back? Isn’t it hard?” Veronica went on to share more, “Every single one of them pointed to this one woman as they teared up and said of her, ‘she’s the reason I came back. If she can come back, then I can too. Her name is Darlene and she lost all three of her children to Batten and she is here, smiling and giving back to our community.”’
Veronica also shared that many of the bereaved parents she talked to still have a living child, but not this dear lady. As heartbreaking as this is however, she chooses to go on and lives to be an inspiration to many others. She is a shining example that Veronica could draw from in the future. All of this speaks to how important Veronica’s conference experience was to her and her family. It also shows how important the BDSRA, led by Amy Fenton-Parker, is to the Batten community. Would the community even exist without this organization? Like so many other families before her, Veronica found comfort in the fact that she wasn’t alone in all of this. That was after she found the Batten community and the people that understood her situation. From the very start though, Veronica would find that they would be up against obstacles when it came to Brynn’s care. These were financial obstacles and those that have become part of the medical establishment. Veronica shared, “When you need so much so quickly, it can be very difficult and overwhelming. We had to buy a new house to accommodate our situation. When you’re in a situation like this you need equipment, a bathroom remodel, and a wheelchair van. You have to go through the dreaded Medicaid approval, annual renewal, and the boatload of paperwork for the waiver and self direction….” It goes on from there. Some of this, we had to deal with as the parents of a son with special needs. For the parents of one that battles Batten disease, things can be much worse. Sometimes, a Batten family’s greatest help can come from inside the Batten community itself.
Parents that really want to make a difference will form non-profit organizations and many provide much needed help and assistance. Veronica shared her gratitude for one such non-profit, “I am beyond grateful to another Batten mom, Beth Fries, who has a nonprofit, Rare Sisters. It is because of her organization that we have a paid off wheelchair accessible vehicle now.” This is a family that has taken their own struggles and turned them into an opportunity to help others in the Batten community. Well done! Of course Veronica advocates for Brynn by keeping her eyes open for new therapies and medications that could be helpful. Brynn takes a prescription drug named Miglustat. Veronica says that it helps with Brynn’s mobility and it also helps her to have more meaningful conversations. It’s working towards its intended purpose. The drug was being offered in the form of a clinical trial but there was a problem with this. That was that some of the kids in the trial would receive a placebo while others received the real drug. This is the FDA’s way of doing research. That would seem unfathomable to many of us and it was definitely unacceptable to Veronica. She would find out that the drug was available through insurance without being part of the clinical trial. The problem with this is that Miglustat is “insanely” expensive, in Veronica’s words. In fact, the drug is extremely expensive and out of reach in price for most any Batten family. Veronica advocated for her child and made sure that she would get the real thing while having it paid for. Veronica’s insurance pays half and Medicaid covers the other half of the total cost. This only took place through her persistence as several other family’s claims to medicaid have been turned down.
Can you imagine the amount of work that it took to gain this approval? Brynn is certainly worth all the effort but things shouldn’t be that difficult. That is however, the way things are inside the medical establishment. That is also why these kids need an advocate by their side. One like Veronica. Brynn hasn’t had a seizure in a year. This is in addition to her improved mobility and greater cognitive ability. Could it be that the Miglustat is helping with the seizures as well? It would certainly appear that it is! These are things that a parent shouldn’t have to worry about and Batten disease seems so unfair. This especially as it happens to the most innocent of our society. The degenerative nature of Batten is not something that should take place in young children and teenagers and it breaks this writer’s heart. That is to know that something like this is taking place in the life of this young person. Brynn is a beautiful girl and she should be left to experience all of the events that take place during a girl’s life as it continues. Graduations and goals being achieved, dating and perhaps marriage are all of the things that we look forward to seeing in our children’s lives. However, these are the things that might be missed when we are talking about a child with special needs. This is never more true than when we are dealing with someone who has a condition that is known to be fatal in its outcome. How does a parent deal with something such as Batten disease? Simply said, Veronica put it to me like this, “We do our best to live in the present.” One day at a time, a person puts one foot in front of the other. Moving forward, this family does everything that it takes to make Brynn’s life, the most special and impactful life that it can be.
Love and Support
Veronica shared, “I would say that our life was already changed somewhat because Brynn was blind. I already saw the world differently than others.” Batten, however, has no doubt changed this family’s way of thinking to a larger degree. Brynn has caused them to appreciate the life they have together so much more. I would guess that they are less apt to worry about things that do not matter. Veronica says that they look for the little things that mean so much and they also look for the special moments that will always be remembered. Veronica adds, “Some days can be really difficult emotionally because you feel so alone and no one can relate but I am doing a 1000 times better since I met my long lost Batten family.” The value that is associated with being part of the Batten community can’t be overstated! Jacob has helped Veronica raise Brynn since the time that she was a toddler. She has always been a daughter to him and she has never been a hindrance in any way. He is exactly the kind of support that you would expect him to be. Veronica shared, “Jake is an amazing support mentally, emotionally, and physically. We are a team and it is definitely a team effort. We equally share the support for the most part.” A guy’s work can often take him away from home, leaving mom to take care of many of the things required in this battle but Jacob is there in all the ways that he can be. Brynn’s siblings help out willingly as well, without having to be reminded. They all help in guiding Brynn to the places that she needs to go. I already know, without even asking, that Veronica’s mom is always able and willing to lend a hand when needed. Of course Debbie, now retired from the Navy, is always on hand to help.
But wait, Brynn actually has two grandmothers named Debbie. They both carry the title "Maw Maw" in this family and Veronica is thankful for both of them. She shared, “The Debbie duo will often joke about which one of them is the bad maw maw but I am grateful to have both of them in our lives. We love them very much and they are a great support system.” I know that there are others as well that contribute at various times. For example, those that came out of the purchase of the special glasses when called upon. There is a community there in Belle Chasse that is willing and able to help. Those are some good people down there and how can you not help when you know the facts? Veronica had never heard of Batten disease before Brynn’s diagnosis. However, it all made sense to her once she compared Brynn’s issues with the symptoms of Batten disease. Life is different now. There is a love present that is like none other. The love that you have for someone like Brynn is a love that is profound and undying. Veronica shares, “My life and family will forever be changed by Batten. As long as I live, I will advocate for Batten families. Brynn is my child, my first born, she is who made me a mother. She is the most genuine, forgiving, loving, and religious person I know. People can learn a lot from Brynn. I certainly have. She teaches me patience and how to see the world from her perspective. She has taught me how to fiercely love and advocate. She gives me motivation. Motivation to change this repetitive ongoing cycle of healthcare issues that special needs parents face.” What these kids do to us and how they can change us cannot be overstated. That is, of course, if we take the time to look past ourselves, and to the plight of others.
These kids are the most special and the most amazing because of the kind of resilience that they show us. I know that Brynn would like things to be different and yet, she too presses on. She gives life her all and lives it to the fullest that she can. And that smile is beautiful! Brynn recently participated in a beauty pageant. Veronica shared an article that they helped with for their local paper concerning the event. Here is how it began, “Congratulations to Belle Chasse native Brynn Poe-16, for recently being crowned Miss Miracle Beauty 2023 at the Miracle Beauties Pageant on Sunday, November 26, 2023! Brynn is the daughter of Veronica & Jacob Brewer and the late Brenton Boudreaux.” There is a story behind the inception of this event. Let me just say however, that the event was formed out of the love that another family had for their daughter with special needs. Veronica had this to say about Brynn in the article, “I have always known that Brynn was a very special girl. She has been through so many trials in her short life yet her faith in God has never wavered. She is such a happy kid that has touched the lives of so many people. She continues to show the world that she will do anything that she sets her mind to.” Watching Brynn as she accepted her crown was a special experience for everyone that was in attendance. It was shared that watching her level of excitement while chanting “I’m a Queen” was special to watch and the event will be remembered forever. These are the things that last and that will stay with this family as long as they live. One day at a time, taking in all the moments that are so special. It’s always a privilege to be given the opportunity to write these stories.
This story was a bit of a “small world” type for me. It is one that I appreciate helping to tell to others! All my best wishes to the Brewer family. Show us what a warrior princess you are Princess Brynn. Thank you all for your patience and thank you for taking the time to read this family’s story! Your friend,
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