Spotlight on AHC Champion Derek (FL)
Derek was born October 29, 2012 at a whopping 7lbs and 6oz. We knew with the pregnancy we had quite the child! He was perfect all around! As days and months went by, Derek would gain weight but his muscle mass was a little low, according to his doctor. Not too concerned, we continued life.
In late February, we decided on a beach day with Derek and his sister Hailey. It was perfect out! During that time Derek was learning to lift his head up, sit up, and do what most babies do a little earlier. We took pictures and played in the water and had lunch. It was later that evening I noticed in the pictures that something looked wrong. Derek’s face was distorted and droopy. Ed and I talked and decided to call his doctor. Again not too concerned.
But then on May 21, 2013, our lives changed. Derek had not been feeling good. Nobody could figure out why. I went to work in the evening as usual, while his dad was home with him. It was about 10:40 pm when I got a call that something was wrong with Derek and to get home. As I rushed home I called his doctor, who instructed us to call 911. Derek’s droopy face and non-movements concerned the nurse on call. Paramedics came but he was completely normal again, sleeping. A few days later he had his first seizure. After several stays at our local children’s hospital, Derek was transferred to All Children’s in St. Petersburg. There we stayed on the epilepsy unit for eight days.
I will never forget that day in July. The Powerball was at an all-time high, and my son was hooked up to wires and oxygen. The doctor in charge came in, looked at Ed and me, and said, “I am pretty sure I know what is wrong with your son, and you have a better chance at winning the Powerball tonight than with what I think it is” and he hands us a ticket. The whole night we watched Derek squirm around, jerk, shake, and stiffen up; slouching in the chair with his beautiful hazel eyes moving around. His doctor comes and he says, “Did you win the Powerball?” And we shook our heads no. His doctor watched him all night and all morning. He concluded it was in fact AHC.
Never have we had a doctor tell us to Google what anything was. This doctor did. As I read page upon page, and article upon article, I could not believe this was what my son had. No way. Some days of episodes and paralysis later, I realized he in fact did. Crying doesn’t even begin to explain how upset we were for Derek. But the diagnosis explained everything. His delays, his behavior, his body being limp, his crying, drooling, drooping, and so much more.
To say Derek is just one in a million is such an understatement. He is an amazing boy who in four years has overcome so much, between brain scans, blood work, ICU stays, trips to Duke, therapies and so much more. And through it all he smiles, he laughs, and he loves everyone he comes across, while giving such great big hugs! AHC has changed our lives. It can be so lonely, scary, and heartbreaking. But it has also blessed us in many ways with meeting so many amazing kids, and families who walk through a similar journey as we do. At four years old, Derek has proved the doctors wrong with walking, talking, and counting to 5! We have more down days then good days, and sometimes we even have to take extra time to do normal everyday things. But Derek never gives up. He is always trying to do things he has trouble doing until he can do it. Derek is much more then 827 in the world or one in a million. He is our Chubby Bubby, our Funny Bunny, he is our little champion! He is our hero, always overcoming AHC.