About Duchenne MD
Duchenne is a progressive neuromuscular disorder that causes a loss of motor, pulmonary, and cardiac function, and ultimately premature death. It is caused by a mutation in the gene that encodes for dystrophin, a lubricating protein that supports muscle fiber strength. When dystrophin is missing in the body, muscle cells can be easily damaged and can cause progressive muscle weakness in the entire body. Boys with Duchenne are born seemingly healthy and decline over time, typically losing their ability to walk around the age of 12 and succumbing to the disease in their early to mid-twenties.
Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone.
Duchenne Awareness Day
September 7th is World Duchenne Awareness day. On this day, across our country and world those affected by Duchenne bring awareness to this rare disease that afflicts 1 in 3500 boys each year. Many wear RED in memory or honor of someone with Duchenne. Levi's school, classmates & teachers dress down or wear RED this day in honor of Levi and all those affected by Duchenne Muscular Dystrophy. Each student/teacher donates $5 to participate and the monies raised goes to a Duchenne non-profit of Levi's choosing, in 2018 it was THE JETT FOUNDATION.
Jett Ride 2019
In 2007, Christine McSherry, founder of the Jett Foundation started JettRide, a cross country cycle tour for teens to spread awareness, unite families and inspire others to fight against Duchenne muscular dystrophy. JettRiders consist of teenage siblings, relatives and friends of boys living with Duchenne.
In 2018, Levi's brothers, Luke and Lance, first joined the JettRiders team. They rode from Washington, DC to Boston, MA in a 3 week timeframe. This year, 2019, the JettRiders rode from Sandusky, OH to Point Pleasant Beach, NJ in
2 weeks, through 5 states, and 700 miles. The best part about the ride is that the riders visit many families affected by Duchenne and bring them the gift of hope.
On February 13th, our much needed handicapped accessible van finally arrived! It was a special moment for us. Levi's classmates at Cedar Crest Middle School helped him celebrate by gathering outside to watch the van pull up in front of the school. Levi's classmates raised $700 for the van by holding a dress down day.
We are so grateful to everyone who contributed through the JETT Giving Fund which helped Levi get his van. Your generosity in conjunction with the JETT Foundation's matching gift made this dream a reality for Levi and our family.
A special thanks to Cesar Rivera, owner of Purple Ribbon Mobility, who did a great job on the van conversion.