Sean Wheeler

Sean's mom, Jessica, and I recently connected on facebook. The Wheelers don't live too far away from us, so we hope that we will be able to meet them someday soon. Here is what Jessica wrote about her handsome son...

Sean was born April 17, 1998. He was the healthy baby that I had prayed every night for. At three days old he rolled over in his incubator in the nursery and the nurses told us that we would have to watch him closely because he was a “strong one.” Things changed so slowly, that for months we didn’t notice that anything was changing. At about nine months I began to worry. Sean didn’t crawl and while he could stay sitting up, he couldn’t get into that position by himself. We took him to the doctor and she said that he had low muscle tone, but he really wasn’t that far behind. She told us that they worry more if babies are losing abilities. I went home and watched a video of Sean that had been taken over about six months time. You could see that in the earlier videos he was moving his legs, but in the later videos he was not.

Our lives changed forever the night before Sean’s first birthday. Sean had been to the doctor for a check up and I told her about how his hands shook when he was really upset. When she witnessed this for herself and he still wouldn’t put weight on his legs she said it was time to start running tests. That night I couldn’t get muscular dystrophy out of my mind. I looked it up online and read about all the different types. I was feeling really good, none of them sounded like Sean. Then I got to the last on the list, Spinal Muscular Atrophy. They happened to describe type 2’s in detail. As I read my heart sank, and when I read about hand tremors I just knew. I even thought to myself that I would remember that moment for my whole life.

We had a big party for his first birthday the next day, but there was a dark cloud hanging over us all. The next Tuesday I called the doctor to ask her about SMA and she said that Sean couldn’t have it because he wasn’t weak enough. So we ran test after test. They all came back negative. At 14 and half months old I asked about SMA again. The doctor said that he couldn’t have it because he had reflexes, but when she went to show me they were gone. Between his one-year check and 14 months he had lost them. She said, “OK, we’ll run the test.” I remember sitting in her office two weeks later when she came in and said those dreaded words, “I just got off the phone with the lab, the test was positive.”

We are very fortunate to have an incredible pediatrician who does everything she can for Sean. She never told us to take him home and love him; she does everything she can to make sure that Sean’s life is full and as healthy as can be. Sean is now 13. I was filling out a medical form one day and one of the questions was “is he healthy?” My answer: “definitely healthy."

To learn more about Sean, please visit his website: www.caringbridge.org/visit/seanw