Drake

2019 EMBRACING BRAVE North Texas Fall Recipient

We started noticing something different about Drake when he wasn't hitting mile stones around six months of age and that is where our journey began. Even though he was always smiling and laughing we knew something wasn’t right with all his delays.  We did years of MRIs, genetic testing, and any other test a doctor would recommend to figure out what was wrong with our son. Every test came back with nothing. This went on for years and any new doctor we thought might have an answer, we took him to and still nothing. Drake was still not crawling or walking, feeding himself, communicating or hitting any other age appropriate milestone but still loving life and always happy. We started OT, PT and speech to help with the delays and improve his function of life.  

When Drake was 3 we moved to Texas and he started having seizures, we saw a team full of doctors again, this time epilepsy was all they found. We were still on a mission to find more answers and help Drake the best we could. We always came up with nothing. We finally asked the question, are we trying to find a diagnosis for Drake or for ourselves. He is the happiest kid and loves life, but he had no idea why we were putting him through the poking of needles and numerous tests. We decided, with a team of doctors, that we would go with the diagnoses of static encephalopathy, which means brain disease or malfunction. We knew we would still do everything we could to help him improve with therapies and let him enjoy life. Since we made that decision, to put him in every type of therapy that we can and allow him be Drake, he has made huge improvements. Every day is still a challenge since he depends on us for everything, from dressing himself to having a drink of water. He can't communicate verbally but he always has a smile on his face and loves life. Drake loves all animals, his sister (Emma), participating in Special Olympics, swimming, and anything outdoors. Drake uses a special needs bike in one of his therapies and our family will use the proceeds from Just for J to help us purchase a special needs bike for home to go on bike rides outside. - 2019