Last night, another beautiful spirit in the Duchenne community left this world much too early. Matt Petrusko was a 34-year-old from Rahway, New Jersey and a proud member of PPMD’s Patient Adult Advisory Committee (PAAC). His family told us that he died suddenly, yet peacefully, at home surrounded by love. Matt held a Master’s degree in Political Science from Kean University. He was brilliant and kind, and will not only be missed by his friends and family, but by his band of brothers on the PAAC.
As a member of the PAAC, Matt took a particular interest in recent legislative initiatives and Respiratory recommendations. Matt had been working on developing a Ventilatory Considerations resource for families with fellow PAAC members which will be published this summer and was passionate about living an active lifestyle. He taught us all how to live life to its fullest. Like all of us, he was in shock when he found out that fellow PAAC-man, Ben Cumbo had passed.
Losing two wonderful men in such a short time span is another stunning reminder of how horrific Duchenne is. It’s a reminder that cardiac issues are more important than ever in our fight to treat this disease. And while those of us who knew Matt would give anything to have him back here with us, there is some peace knowing that he, Ben - and all those we've lost to Duchenne - are looking after us, guiding us from someplace where they are finally free from limitations.
Our hearts and prayers go out to the Petrusko family.