Go Braylon Go

My name is Deshaun and I was blessed with this sweet boy on January 15, 2010. He was progressing beautifully until he was about 3 months old and he started having seizures. However, we did not know what was happening to him was actually seizures. He was diagnosed first with acid reflux and given meds to treat this. We had seen no more activity since the meds until we went on a family vacation and the spells of stiffening, redness in the face, and some jerks became more intense. At the time Braylon was 6 months and we decided to head back to the neurologist and explaing that this cannot be acid reflux. We began to tape the episodes and he had a few EEG's and that is when it was confirmed that is was indeed seizures. I was devastated and did not know what this meant. We bagan the long road of medications and treatments and nothing was really working. We decided, with guidance from the doctor to go ahead and have a Vegas Nerve Stimulator placed inside Braylon. A VNS is supposed to help shock the brain into stopping the seizure and help his seizures. At this point he was a year and a half and I was terrified for him to have surgery. However, he did great and at times we felt and still feel like this helps, but not always. We tried then steroid shots called ACTH and this did not do anything. At this point Braylon was having multiple seizures a day and they could last from 1 minute to 10 minutes. We were encouraged to move Braylon to UCLA medical center because they have doctors who specialize in just epilepsy in children, and even more specifically in infintile spasms. Infintile spasms are a different form of seizure and they are jerk of the body and can last minutes or longer. The doctors at UCLA are fantastic and they helped us kind of move on. We tried many medications, surgeries, options, but NOTHING was working! Finally, our doctor did genetic testing and we discovered that he has a deleted portion of his X chromosome. The name for this is CDKL5. CDKL5 is a scary thing, but we have learned to be strong and be there for our precious boy. CDKL5 is a rare X-linked genetic disorder that results in early onset, difficult to control seizures, and severe neuro-developmental impairment. This is almost exclusively found in females!  It is an orphan disorder, however more children are being diagnosed as awareness of CDKL5 spreads.  Most children affected by CDKL5 suffer from seizures that begin in the first few months of life. Most cannot walk, talk or feed themselves, and many are confined wheelchairs, dependent on others for everything. Many also suffer with scoliosis, visual impairment, sensory issues and various gastrointestinal difficulties.  Braylon is one of about 20 boys known to have this deletion and diagnosis!  When you look at all the boys that carry this trait they tend to be more severe and are completely dependent on others to care for them!
Braylon is also tube fed and on a ketogenic diet. This road has not been an easy one and we have struggled with many seizures on a daily basis for 4 years and it has been trying. We have now been at UCLA Medical Center for 3 years and are working towards starting a new treatment in the near future, the cannibus oil. We have home health care nurse and we are ever so thankful for him and all he does for our sweet boy. We are also working towards getting more physical therapy, occupational therapy (which all require money to give him) speech, and a more suitable vehicle for our needs. My prayers are we can find something that works and be able to start on a road to recovery. As of right now Braylon is completely dependable on us. He is very hypotonic, floppy, has NO head control, cannot talk, walk, sit up......nothing. We are on a waiting list to try a new study for children with seizures so we are waiting on that. We, as a family, decided to create this fund to help us raise money to get Braylon a Head Pod, to help with his head control (
www.headpod.com), raise money to get us a vehicle that is equipped for Braylon's needs and can fit all of his equipment in the car when we need to travel and get to doctors appointments which are 2 hours away. He also needs a medical bath chair, car seat, stroller, and much more. We are so blessed to have received so many things, but these are just a few things that are needed that we know we do not have the money for. We only want to help our son and give him the best life he can possible have. Your love and support does not go unnoticed and we are ever so thankful for everyone who loves and cares for our sweet boy.

The Treyes Family