Aiden Hellwig was featured in the Winchester Star this week in a heartwarming story making light of his debilitating illness. With a little help from his family and friends, Aiden was able to partake in Halloween festivities in a fun and creative way. Read here.
My name is Aiden and I have Chiari….and asthma and neurogenic bladder and bowel and chronic migraines and joint pain and anhydrosis and well, you get the idea. I have been on homebound studies for 4 years but this year I am getting on the bus and going to 7th grade with my friends. At least I did for one week. I spent my second week of school at home in awful pain with a migraine that will not go away. I am taking lots of medicine and nothing is working. If it doesn’t get better by tomorrow I will have to go into the hospital again for an IV and stay there for 4 days. This happens to me all the time. The nurses know me as soon as I get off the elevator onto the neuroscience floor. When I was a baby my mom says I was always uncomfortable. I cried all the time, I threw up constantly and I never slept. I spent a lot of time in the hospital and was on a feeding tube because it was the only way I could eat. When I was almost one year old my doctors noticed I wasn’t doing what other babies my age were doing. I did not talk at all, didn’t even babble like a baby and I couldn’t sit up because my right side didn’t work. I also hated blankets or anything touching me and I would scratch things and bang my head on things and cry all the time. I also started to be sick with fevers all of the time and get infections. When my Mom tried to get me to eat solid food, I would have a hard time eating and swallowing. Then I went to a special doctor called a neurologist who ordered an MRI of my brain and that’s when they found the Chiari. I was 20 months old when I had my first surgery for my chiari. Not my first surgery, I had a couple of ear surgeries before that and 3 more after that and bowel surgery and surgery to clear up an infection on my hand caused by the Shingles I have on occasion. Anyways, more about that later. I had a hard time healing from the chiari surgery but I did much better and I started talking, using my right side, smiling and eating. I still didn’t like bright lights or loud noises and my mom had to change my socks three times every morning before I found ones that were comfortable and I still got sick a lot. Pneumonia, shingles, UTI’s, ear infections, menengitis,etc… With a lot of help from physical therapy, occupational therapy, speech therapy and my doctors I was doing better. Well, that’s the beginning of my very long story, I will tell you some more on my next post!