Stories

Patches for Ian a Success for 13-Year-Old Duchenne Patient

December 30, 2015

Fighting Duchenne Muscular Dystrophy and facing spinal surgery, a Lubbock teenagers life is a struggle. But with his love of firemen and the help of social media, his spirits were lifted.

If you asked 13-year old Ian what bothers him the most and he will tell you through thick emotion, “Being in this chair.”

Ian has been in his wheelchair for three years now and it’s hard on him.  He really wants to be a fireman, but Ian isn’t battling fires, he’s facing a battle of his own.  Duchenne Muscular Dystrophy affects mainly boys, and Ian’s mother Michelle explains it best.

“Duchenne is a hormone that’s produced by the body and the boys that do not have the protein don’t develop a protective coating around the muscles, the muscles are just deteriorating and so they have huge calves and huge thighs, but they have no strength, the muscles just don’t work.

In just a few short years, Ian has gone from walking to leg braces, a wheelchair, a motorized wheelchair and now he is losing strength in his hands and arms. Through the Muscular Dystrophy Association, the Firemen have been there every step of the way.

Ian says, “literally they are like my best friends to me.” His love of firemen encouraged him to begin a patch collection in 2014.  It all started with the Shallowater Patch.  And with the help of a social media request, Ian’s Patch Project continued to grow, firefighters showing strength in number, strength Ian needed before surgery.

When asked if he was worried about the surgery or nervous, he told me, “Kind of nervous about it.”

Nerves are understandable for anyone having back surgery, but because of the muscle weakening, this surgery was risky business. His mother Michelle says, “they can’t do exercise to strengthen and so they have to have the spine fused, and if they don’t then it compromises the function of the lungs and the heart.”

Read more at the source here.
 

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