David

2019 EMBRACING BRAVE NTX Spring Recipient

David was born on April 27, 2004 with a twin brother, Connor. He was 7lbs. 11oz., which is huge in the twin world. They were over 38 weeks along upon arrival and the pregnancy was perfect. After a few weeks, David’s parents noticed some unusual behavior. David was grunting and turning red and his eyes would bulge. His mom took him to the pediatrician several times and was told it was reflux. Previously having a daughter with severe reflux, his mom knew that something else was going on. After a few months, David finally got a referral to see a neurologist. A series of tests and an EEG told the doctor and his parents that he was having seizures. This heartbreaking news lead to years of research trying to find the cause. No doctor, geneticist or specialist could tell David’s family why this was happening. The family tried countless seizure drugs, therapies, injections, supplements, etc. all with no relief. David underwent several surgeries to fix strabismus in his eyes, to take mitochondrial biopsies, to implant a vagal nerve stimulator and to put a g-tube into his abdomen so that he could get his nutrition and medications. The g-tube was crucial because, by this time, David was refusing anything orally and came close to passing away. He and his mom spent 14 days in the Scottish Rite hospital trying to get him stable enough to have the surgery.

When David was just 7 years old, he was staying a week in the epilepsy monitoring unit at Cook Children’s Hospital. His neurologist, Dr. Perry, along with a geneticist, decided to give a new test a try. His mother can remember the phone call as if it was yesterday. It was a blessing to have a diagnosis, but it was a diagnosis with no treatment nor cure. His mom was told that David has CDKL5. This rare neurodevelopmental disorder prevents specific, necessary proteins from being created for normal development. CDKL5 causes developmental delays, seizures and more. To date, David has had over 60,000 seizures and the number grows daily. David has never crawled, walked, talked, etc. He depends 100% on the help of others for survival and every day activities. David is wheelchair bound and has a private duty nurse with him at all times when his parents are at work. He is currently in the special needs program at Eaton High School and enjoys his time there in adaptive PE, choir classes and being around others.

Over the years, David has been the reason behind a wheelchair company changing its design to be safer, been the inspiration for others getting grants, and has been the reason so many have renewed and deepened their faith. David is surrounded by his family when not at school and enjoys their big Cajun family gatherings, going to church, going to his grandparents’ cabin, watching movies and listening to music. He spreads love and joy wherever he goes and has truly impacted the lives of those around him. His family has been working hard raising awareness and is part of the research group striving for a cure. David and his family are so proud to be a part of the Just for J family.- 2018