Guest Post: “Our Story” by Stephanie Fetrow

As we kick off this Team Escalade Texas competition this week, I wanted to have my sweet friend share her personal experience with Duchenne.

(Taylor Fetrow with his sister when Make-A-Wish and Cadillac provided them with an Escalade for a week as part of his wish.)

In 1997 my 3 year old son Taylor was diagnosed with Duchenne Muscular Dystrophy. We had been pushing for answers for 18 months regarding some significant delays we had seen in him. He couldn’t keep up with other kids his age, had difficulty with stairs, didn’t care to run & jump & skip & climb like most typical young boys. Finally after many blood tests & consultations we had a fabulous doctor that was able to connect the dots.

We immediately met with a Neurologist who gave us the devastating news that our son had an incurable disease that would cause every muscle in his body to eventually “die” & at some point he would be unable to walk probably by the age of 12, he wouldn’t be able to shake hands, feed himself & maybe not even be able to talk. The heart & lungs would suffer greatly due to loss of muscles around them & would eventually be the cause of death in the late teens to early twenties.

I was 26 years old when the hard truth of my son’s future began to sink in. My husband was 31 & we had an 18 month old Daughter already. We also learned that Duchenne is an X linked genetic disease but it was possible that he was a first generation disease as well. My daughter & I were tested & found to not be carriers of the dysfunctional gene.  However the risk is still there that it lies in our eggs verses our DNA.

Our story is one of hope that I love to share with other DMD families & anyone else that wants to hear. In 2003 Taylor, at the age of 8 began to have trouble with his stamina & some trouble walking. So we finally started our first prednisone therapy & within weeks we saw a huge improvement. Taylor had started to us a wheelchair for long distances but of course didn’t like it. Well about 2 months into the steroid therapy he decided he didn’t need the chair & until he started his Freshman year of high school didn’t use it for anything if he could avoid it. Once he hit High School he realized he needed a little bit of help to get around the large campus & so he uses a 4 wheeled scooter at the school & at events. However he can & does still walk as much as possible.

One of the things the doctor had told us at the time of diagnosis was that the longer Taylor walked & retained muscle strength around his heart & lungs the longer his life span would be exponentially. So at 17 he is still walking, has no heart issues & has better lungs than most Asthmatics! We truly believe we have a miracle in Taylor’s life BUT we still need a cure.

While he is living life to his absolute fullest there are so many things he may never do because of his physical limitations such as drive a car, play sports in High School (although if you ask him about any local HS team or any college team he can tell you more then you every wanted to know), maybe have children or get married.

So a cure is needed now and to do that we need money – unfortunately lots of it. There are teams of doctors all over the world (literally) working from lots of different angles to find a cure for this disease. When they succeed it is predicted that the solution will also help cure many other diseases that are less complicated but have similar issues.

Please don’t forget to go to Team Escalade Texas today and vote for CureDuchenne. You can vote up to once a day. Thank you!

MelissaStuff is working with Team Escalade Texas to help promote this competition and the various charities involved courtesy of Cadillac.