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.

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About Keelan's Crew

KeelanKeelan 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.  At nearly two years old, he loves animals, any and all vehicles, making friends, and his big sister Ella (“Ella” was his first word).   He is also a big cuddle bug, taking off his shoes in the car seat and calling for Mommy to rub his feet!  He is extremely social and loving.  Give Keelan some Matchbox cars and a windowsill to drive them on and he’s a happy boy!

Keelan began Early Intervention at the age of 9 months when we (Mom and Dad) brought concerns of developmental delays and food aversion to his doctor.  We had every expectation that he would just catch up.  When Keelan was 15 months old, a Gastroenterologist expressed concerns of his growth at a routine follow up for reflux.  He tested Keelan for Celiac Disease (wheat intolerance) and other various blood chemistry.  We received a call in mid-December that Keelan had extremely high liver and CK (muscle enzyme) levels and that he needed to see a Pediatric Neurologist as soon as possible.  On January 2, 2009 genetic testing confirmed the diagnosis of Duchenne Muscular Dystrophy (DMD). 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 by the age of 12 and succumb to the disease in their late teens due to respiratory complications. To date there is no cure and no viable treatment.

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. After the shock wore off, we realized that we were not going to stand by helplessly. We were going to do whatever we could to raise awareness and funds to find a cure. Every dollar brings us closer to extending the time and quality of life for our our son as well as every other boy affected with DMD.

Keelan began walking at 21 months and tires very easily.  He has already started to use his legs to bear his weight while rising to a stand.  He falls very easily, but he always gets back up.  He’s a little fighter.  We couldn’t be more grateful to have our babies, as well as wonderful family and friends who have helped us through the tough times and enjoyed all the little victories with us.  Hope springs eternal.

keelan and big sister Ella

Keelan and big sister Ella

 

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