Since 2011, Sean has put immeasurable amounts of effort into raising money to benefit both his community and a cure for his disability. Some of these efforts include donations to individuals who share his disability, the New Milford VFW, Skate Park, Animal Welfare Society, and most notably; Spaghetti Arms, a volunteer project consisting of Sean and his friends raising money on behalf of the Parent Project for Muscular Dystrophy. Through Spaghetti Arms, Sean has successfully raised about $50,000 through town events, music festivals, car shows, and more in hopes of helping to find a cure for Duchenne Muscular Dystrophy.
Though Sean works diligently toward maintaining a healthy lifestyle, he's nearing 100+ days in the hospital within the past five years. On top of the financial burden and stress Sean and his family face regularly, it's been especially difficult navigating the best option in terms of providing him with another accessible vehicle. This is why we believe it is time for the community to reach back out to Sean and help him to get back to the type of lifestyle he deserves.
Sean's current van
Sean was born with Duchenne Muscular Dystrophy, meaning that having a safe, reliable, and accessible van is not only a desire, but a necessity. We're looking to get Sean a brand new van outfitted with all of the adaptive equipment that helps to meet these requirements and provide him access to daily errands and activites.
Sean on March 15, 2018, three weeks into recovery
What the money will be used for:
1. The first priority is raising the inital $60,000-80,000 to buy Sean a brand new 2018 Chrysler Pacifica
Minivan outfitted with a van lift and any other adaptive equipment to help make his life easier. Here's a link to something we're aiming to get: Sean's Dream Van
2. To help pay for gas, insurance, etc. on the van and help take some of the burden off Sean's parents who have always been there to support him fiscally, emotionally, and in every other way possible.
3. Any money donated after the intial purchase of the van and associated costs will go directly to adaptive
equipment and outfitting Sean's room/house in ways that help to make his daily tasks a little easier and overall quality of life better.
Sean as a child/pre-wheelchair days
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). 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.
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. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.
- Allan Darrow
- Gary Hults
- Mr. and Mrs Leroy Irving
- Pat Crean
Organizer and beneficiary
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