Keelan's Crew

The most common fatal genetic disorder of children for which there is no cure.

Affects approximately 1 in every 3,500 live male births (about 20,000 new cases each year).

Most kids are wheelchair dependent by age 12

Average life expectancy varies from early teens to late 20s.


About Keelan's Crew

Keelan Keelan Joseph Pothier came into the world big and fast! He was almost 10 lbs. and arrived in about two and half hours. He was always an easy and happy baby. When Keelan was 15 months old, he was diagnosed with Duchenne Muscular Dystrophy. DMD is a neuromuscular disease, the most common fatal genetic disorder of children affecting approximately 1 in every 3,500 live male births. Most children with DMD are confined to a wheelchair around the age of 10 and succumb to the disease in their late teens due to respiratory complications. To date there is no cure. Although DMD is usually inherited, about 30% of DMD cases, including ours are due to a genetic mutation at conception, this disease can happen to anyone. There are no words to describe how we felt after being told that we had to stand by helplessly while our beautiful boy lost his abilities, independence and life.

Keelan is now 7 years old he loves bugs, animals, books, vehicles and Legos. He wants to be a police man and undersea explorer when he grows up. He is a little cuddle bug and extremely social and loving . Keelan falls frequently and tires easily. He cannot climb stairs or keep up with his friends. He has to physically challenge himself to just get around day to day. Keelan also has severe ADHD (found in many boys with DMD) which is exacerbated by his daily dose of steroids. DMD now affects every aspect of his life, physically, mentally, and emotionally. Keelan uses a medical stroller for distance. He realizes that his legs "get tired" and he cannot keep up with the other kids. He wonders why he is different and if he is going to get better.

keelan and big sister Ella

Keelan and big sister Ella

There have been some very exciting breakthroughs in treatments for DMD. However, once children with DMD turn 7, decline is rapid and expenses mount quickly. We already spend hundreds of dollars per month for uninsured medications and supplements. Due to Keelans expanding therapy schedule and hope of getting him into the clinical trial, I will not be able to return to my landscaping job next spring. We are hoping to stash away a copay for a power wheelchair and finish building accessibility for the single level house we moved into last year.

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