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Why I'm Not Looking Forward to Turning 30

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I have a big birthday coming up in less than three months. I’ll be turning 30. But this is a poignant one for me, and one I won’t be looking forward to. Because turning 30 marks the point where I’ll have outlived the life expectancy of my son.

My son Alexis has Duchenne muscular dystrophy, a progressive, muscle-wasting condition. According to CureDuchenne, it is the one of the leading genetic killers of young men, affecting more than 300,000 people (mostly boys and young men) worldwide, yet is largely unheard of. Around one-third of cases are caused by a random mutation where there is no previous family history. Quite simply, Duchenne could happen to any family. Muscular Dystrophy UK states that “few people with Duchenne muscular dystrophy currently live to see their 30th birthday, although with medical advances, life expectancy is improving.”

black and white photo of little boy

At age 7, Alexis is unable to keep up with other children. He has difficulty climbing stairs. He has to use a wheelchair to cover any distance of more than around 100 meters. He has never ridden a normal bicycle. He takes steroids, which cause him to have aggressive outbursts and risk a large number of scary side effects.

By his teens, his legs might be too weak for him to walk at all. During his teenage years, he’ll most likely lose the ability to hug family and feed himself. By his late teens, he could be almost totally paralyzed. As he enters his 20s, he will be completely dependent on a ventilator 24/7, as his vital muscles become too weak for him to even breathe. Lastly, the most important muscle of all, his heart, might be too weak to continue beating, likely before he turns 30. There is currently no known cure for Duchenne. It is 100 percent fatal.

Of course I’ll try to smile enjoy my birthday with my beautiful family. But mostly I’ll be trying to enjoy it for Alexis, because chances are, 30 is a birthday he won’t get to experience himself.

Follow this journey on The Alexis Ruthven Trust.

Originally published: January 25, 2016
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