Aidan

When I volunteered to read my letter that I wrote to my friend's son Aidan in class, I didn't think that I would cry. But alas, I could barely read it aloud. Aidan's story is a sad one, but I thought I would be fine because Aidan is still here and I can see him whenever I want to. The letter does not give much detail on Aidan's condition, as I only referred to it a couple times and since he is only 11, he is still unaware of what is most likely going to happen to him in 10-15 years.

Aidan is an 11 year old with Duchenne Muscular Dystrophy, or DMD. DMD is a rare disorder that only affects boys. The muscles in Aidan's body do not produce dystrophin, which is a protein that is essential for muscle growth. Since his body does not produce dystrophin at all, Aidan's muscles cannot become stronger. Boys with this condition lose the ability to walk by age 12. Eventually, boys with DMD lose the ability to move any parts of their body and usually pass away in their late teens or early twenties. Heart failure is usually the cause of death.

When I met Aidan in early 2008, he was getting around fairly well. Over the past three years I've watched his body begin to fail him pretty rapidly. He can no longer get up off of the floor without help. He uses his motorized scooter or a rented power chair to get around at school because he tires easily. He has a service dog named Song who opens doors for him and turns lights on or off. If he drops something, she'll pick it up and give it to him. Song also accompanies Aidan to Fleetwood Middle School where he is in 6th grade. Last year, the school raised over $7,000 to get Aidan a hot tub for his home. The hot tub helps his muscles relax and he is able to move more freely in the water. Since getting the hot tub, Aidan's father Tom told me that when he stretches Aidan at night, his legs are less tight and the stretching is going much better.

As I mentioned in my letter, Aidan is like a little brother to me who I love very much. He's smart, sweet, funny, and simply adorable. He always makes me laugh and I hope to be able to spend many more years with him.

To learn more about DMD, you can visit parentprojectmd.org or dariusgoeswest.org

Currently, Aidan's parents, Tom Sandor and Maria McDonnell, are fundraising to find a cure for DMD to save their son's life. They are running the Disney Marathon in January 2012 with Run for Our Sons, something that they do every year.

Here is a YouTube video that Maria made to help spread the word about Aidan's condition and their fundraising efforts.

http://www.youtube.com/watch?v=O77miTzrLm8