For those who do not know the amazing Owen, he was diagnosed as a baby with Duchenne Muscular Dystrophy. "Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year worldwide). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.".
"Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties."
"Boys with Duchenne may develop later than children of the same age—for example, speaking, sitting up, and walking. Cardiac problems eventually occur with Duchenne and may start early or during the teenage years. Typically, boys with Duchenne lose their ability to walk between the ages of ten and fourteen. By their late teens, young men lose the strength in their upper bodies, including the ability to move their arms. Also during their teenage years, young men with Duchenne usually need help with breathing at night. Over time, their breathing or respiratory systems weaken, and they require constant support. Young men with Duchenne typically survive into their twenties or early thirties. While there’s currently no cure, with informed and timely treatment, boys with Duchenne can maintain their independence, walk, and live longer than ever before."
We have estimated that it will take about $2000.00 for the van to be inspected, repairs to be made, new tires to be purchased and the taxes/tags and title to be obtained. The sooner we can help Owen get his additional wheels on the road, the better! This van will allow him to continue to be as independent as he can be!
Thank you! Rita
For more information on DMD, you can visit the following link.
- Mike Bianco
- Count Fartula
- Gabe Windley
- Jose Perez
- Sandy Webster
Organizer and beneficiary
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