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Patrick

Live, Work, Independence

Meet Patrick

The oldest of five children, Patrick was diagnosed at birth with fibrodysplasia ossificans progressiva, a rare genetic disorder in which muscle and connective tissue, such as tendons and ligaments, are gradually replaced by bone, forming a second skeleton. Pat did not let his diagnosis slow him down, graduating from Franklin and Marshall College in 2004 and pursuing a career in accounting.

With in-home help and other supports from JEVS, Pat has been able to remain in his own home and, perhaps most importantly, keep a fulfilling, full-time job at Main Line Health as an accountant and software administrator.

When the symptoms of his disease progressed, and in an effort to maintain as much of his independence as possible, he enrolled in JEVS Supports Coordination program in 2007. With in-home help and other supports from JEVS, Pat has been able to remain in his own home and, perhaps most importantly, keep a fulfilling, full-time job at Main Line Health as an accountant and software administrator.

Unfortunately, Pat’s disease is progressing swiftly and his future is uncertain. But what is not uncertain is his indomitable “find the silver lining” approach to life, despite his incremental loss of motion and the daily physical struggles he faces.

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