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Doctors knew something was up with Devon when he was born. Early ultrasounds showed some abnormalities, but nothing else was known. I knew early on that something was special about Devon. Having already had a child, I knew immediately that Devon had no muscle tone and he started missing milestones almost immediately. We were fortunate to have a rockstar pediatrician who got him into therapies by six months old and connected us with a statewide education program that accessed him and immediately got him into public-run therapies. Devon attended public and private speech, occupational and physical therapies for years. The hard work of many paid off with us having him first sit up at a year, crawl at 16 months and walk by two years, two months. Music therapy brought the first real language from Devon, and music continues to open so many doors for him. Devon started having seizures at 4, and he has been on a multitude of drugs to try to decrease them. However, puberty brought on cluster-seizure activity which has landed him in the ER and PICU many times in the last year. Devon was also diagnosed with Type 1 diabetes when he was 15. Despite his physical and medical challenges, Devon is a fantastic young man who is a joy to all who work with him. He has become a loving, caring individual who loves to give hugs, go camping and be around his friends and family.
