Owen's Story

After having two completely normal pregnancies and two very healthy active babies I was not worried about my third one. This pregnancy was normal up until about week 32,where I caught brochitis and a sinus infection, this lasted until about week 36, when I ended up with obstetric cholestasis (your liver produces to much bile, causing extreme itching)they induced me at 38 weeks, and I had a very long  40 minute labour. Owen was born on June 24, 2011 at 7 lbs 15 ounces, he was a very healthy boy with no problems, we were very happy. What more could you ask for than 3 beautiful healthy kids? A day after this I ended up in extreme pain and I figured it was because I had lost a lot of blood during the delivery, but I ended up with a uterine infection, then a couple weeks later postpartum hyperthyroidism. I remember thinking I am so happy all this has happed to me and Owen is healthy.

When I was finally over my illnesses, Owen was about 6 weeks old. We started noticeing he never would bear weight on his legs like Katie and Liam used to. We waited thinking he was just lazy, then Katie started school in September, and te colds started every 3 weeks he had a cold and they would last forever. We just thought it was all the germs Katie was taking home from school. By 4 months Owen still wasnt bearing weight, and his grip wasnt very strong either. He was able to roll from front to back, but that was it. He could hold up his head a little, but not as good as the other two kids could. We took him to the pediatrician who immediately ordered blood work, and xrays. Those were pretty good, his creatine was a little high but they said that was normal. Meanwhile at around he turned six months, I started taking him to physio for his hypotonia. At seven months we took him to another doctor who could not find any reflexes. This whole time we had a feeling it wasnt just hypotonia, when you look up hypotnia it comes up with a lot of different diseases: Muscular dystrophy, SMA(it can't be this we had thought he eats fine, and his breathing is good), central core disease.... When they couldn't find the reflexes we started to know its SMA. WHen we met with the neurologist in March he did the nerve and muscle tests, and then the blood test and sure enough SMA was diagnosed on March 11, 2011 (Dday)

That was the worst day of our life, all the doctors said was there is nothing we can do, he will get worse very quickly and will not live past two. They diagnosed him as a type one, but he is now learning to sit and his breathing and eating are still fine so they are changing him to a two. Owen continues to amaze us each day, he is always smiling, laughing, and playing. He loves everyone he sees, and just babbles constantly. He is my little hero, and every night I pray for him to be healthy, and a cure to be discovered soon so he can be healthy and, run and jump and play.

"Embrace The Suck"

To make a donation to help Owen and his friends, please visit, www.sophiascure.org/donate