CDKL5 Spotlight on Braylon
It’s time for another CDKL5 Spotlight! Meet Braylon! His mom, Deshaun, tells us about her sweet boy.
Braylon was born January 15th, 2010. He was a healthy boy who amazed nurses/doctors with his head control and gorgeous blue eyes. There were no signs of anything unusual except that he had some low blood sugar and was in the NICU for 7 days for monitoring. As a mom you never want to fear the worst or feel that something is wrong with your child, but at about 2 ½ months I knew something wasn’t right. Braylon would hold his breath, stiffen and get angry many times a day. At the time, doctors thought that it was simply acid reflux and kept telling me to give it time.
However, at 6 months I remember thinking that something was off because he was not laughing, smiling, holding his head up, or trying to move at all. This is when things got serious and we began trying everything we could to get a diagnosis. We did 3 EEG’s before catching seizures on one and then the whirlwind began. I cannot even tell you how many medications we tried without any change and then at about 9 months the doctor decided to do genetic testing and we received the news that Braylon had CDKL5 Deficiency Disorder!
We had no clue what this was or what that meant for our sweet boy, but we were and still are fighting for a cure. I was told his life will be hard, but I tell people that it is worth it!
Braylon’s life includes an Live-In Nurse who cares for him while his dad and I work full time. He receives therapies through the school and has a teacher come work with him daily. We travel to UCLA (Mattel Children’s) quite often to see his neurologist, dietician (Keto diet), pulmonologist, and GI doctors. UCLA has been an answer to prayers and everyone there is so knowledgeable and helpful through this whole process.
Braylon has had his fair share of hospital admissions for pneumonia, RSV, and surgeries, but he is a fighter and does it with strength and grace! Braylon has been on the Keto diet since 2014 and it has been the answer we needed to decrease the duration and frequency of his infantile spasm seizures. Before the diet, Braylon was having 20-30 seizure clusters a day that could last up to 19 minutes each, but now he is at 5-6 clusters a day that last no longer than 3-4 minutes. We have the diet and combination of medications to thank for Braylon making progress. As of recently, Braylon has been more active, smiling, making vocalizations, and playing with adapted toys! He is happy and healthier than he has ever been and as a mother that is all I ask for my son.
We have learned that the more we treat Braylon like a young boy his age the more he responds and seems happy.
We try to do things with Braylon that children his age enjoy – swimming, going for walks, Disneyland (his favorite), and the beach. Through all this we have learned that Braylon LOVES the water because that is where he feels free and can be independent. He loves his Waterway Babies neck floaty and floating around on his own! This is where I feel the happiest because I know the water is his happy place and is the best therapy for him at this time. Braylon loves the water so much that his Make-A-Wish was a spa! This spa has allowed Braylon to relax, be free, and feel happy. This was the most amazing blessing and something that we will use for many years to come.
As I had mentioned earlier, we did not receive Braylon’s diagnosis until he was 1½ years old and it was due to a gut feeling from the doctor that made him try genetic testing. Once we had this diagnosis I was not quite sure where to turn. The state covered genetic testing for myself which was agonizing because waiting for the results was long! We discovered I was a carrier of this genetic mutation! How could this happen? Why me? Why my sweet Braylon?
These are questions I replayed over and over in my head, but never could find peace. Our doctor knew that we needed more answers, so we were referred to UCLA (Mattel Children’s) and we have not been more pleased with the care and support we receive. We had never heard of CDKL5 nor met other kids with this diagnosis until a young lady reached out to me and said to look up the International Foundation for CDKL5 Research, as well as a facebook page for parents.
When I was able to talk to other parents and find more boys with CDKL5 I cried! I finally felt like I was at home and could get the support that our family was lacking. After talking to many parents and families of children just like Braylon, I came to grips with the fact that this was not my fault, nor would I have ever known to look for this trait since it was so new/rare. Braylon is a gift……there is no mistake in that!
I have found peace in knowing Braylon’s diagnosis and that we have a plan.
Our plan is not perfect, but it is a work in progress. Each day we learn something new from Braylon and find new ways to help him make baby steps. Instead of looking at Braylon like a broken child I now am able to see him as a young boy with characteristics that require more support and care. Braylon was made perfect in God’s image and I am at peace knowing that he is perfect just the way he is! Our goal now is to give Braylon the best quality of life and to treat him like a 9-year-old boy.
Since Braylon eats via g-tube, we will continue with the ketogenic diet, since this is what has worked the best, monitor his seizure activity, and try different ways to keep his spasms at a low amount per day. We would like to try CBD oil again, but we have to discuss options with our neurologist in the near future. We use essential oils daily on Braylon and these definitely calm him and ease his aches and pains. Besides having CDKL5, Braylon is a pretty healthy boy, but we are careful during flu season and stay home! The good news is that Braylon has had no hospitalizations due to illness in 2 years! Praise the Lord!
A few years ago, my biggest fear was losing my child and how I could live without him! Now I am beginning to realize that Braylon is a fighter and he is not going anywhere! He has friends all over the world and families that rejoice with us when he makes progress and support us when he is struggling. Braylon’s diagnosis has brought him so many brothers and sisters who have become family. I am so thankful for the IFCR and for providing us with the information/resources we need to provide Braylon the best care and treatments.
My advice for other parents who have recently received a CDKL5 diagnosis is to reach out the others, connect with families, the IFCR, and develop relationships. Do not be afraid to ask questions and be your child’s voice! Speak up and research what you feel is best for you and your child because you know your child best!
CDKL5 Deficiency Disorder is not the end of the world but is a gift in ways I cannot explain.
You can follow Braylon’s journey on his Facebook page: Go Braylon Go