My great-nephew, Carter Anderson, was born on April 10th, 2008. He was diagnosed with a rare disorder, when he was three years old. Due to this medical condition he suffers from seizures, severe neuro-developmental impairment, and scoliosis. Throughout his first year of life, my family had noticed something terribly wrong when he wasn’t tracking, showing no neck control, and couldn’t hold objects. Sensing something was not right we made numerous trips to the University of Iowa Children’s Hospital, underwent days of testing, and hoped we could find some answers. It wasn’t until we went to Mayo Clinic in Minnesota that we learned of several disorders and the rare X-linked genetic disorder, CDKL5. Within the next few months we researched this syndrome and disorder that our precious brown-eyed boy would have for the rest of his life. Life expectancy, quality of life, medications, seizures, and time in the hospital were all things that were on our minds. During such a devastating and heart-breaking time, the staff at Mayo was amazing. From the doctors to the wonderful volunteers, I felt like Carter was in terrific hands. I’m so thankful for the patience and love they’ve shown Carter and the rest of my family through the years. After years of worry, we finally had an explanation. Even though he can’t walk, sit-up, or talk he has an amazing personality and is one of the strongest people I know. He has surpassed a given life expectancy of five years, an adenoid procedure, hip surgery, years of strong doses of medicine, trials of the Ketogenic diet, numerous X-rays, physical therapy, daily seizures, and painful pricks and pokes. At this time Carter makes monthly trips to Mayo so that they can monitor how he is doing. Usually, at these appointments, they examine his seizure activity, take X-rays, and alter his medication to exactly what he needs at that time. Not a day goes by that that my heart doesn’t break with the pain he lives with. I believe in miracles but research shows that with the severe neuro-developmental impairment there are no chances of improvement. Even though Carter is limited in mobility, I’ve always wanted him to experience things other kids his age do. He’s attended school, been to a baseball game, football games, the zoo, the circus, been to the movie theater, parades, carnivals, birthday parties, went trick-or-treating, danced (in his kid kart), participated in an Easter egg hunt, and so much more. It’s questionable whether he can process what he sees or hears but I know, by being with him so much, that there is something there. This little boy loves things that light up, sounds, and he knows where he is. I see that light in his eye and that smile on his face when he hears a familiar voice, his favorite song, the noise of a cup full of ice being shaken, or a bag of potato chips rustling. I know he can feel how much he is loved. Every year he gets a little taller and a little heavier, which makes the daily movement of this sweet boy very hard. At this time we are working to pay off his wheelchair accessible van. I may not be able to heal him or take away his pain but I would give anything to make sure he is comfortable and happy for the time being. I know we have a long road ahead of us but with Carter’s strength, his team of doctors, and ongoing research that we will continue to fight.
