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Jun. 18, 2015

TOPIC: Patient Stories

The Fight for a Cure for Duchenne

Posted by Christina Jensen

When Robert and Theresa Capolongo were preparing to be parents, many words were thrown around by their friends and family about the joys of having children. “Fulfilling.” “Life-changing.” “Beautiful.” These were, of course, balanced with considerate pieces of advice. “It’s the toughest job out there.” “It’s not about you anymore, it’s about them.” 

All of the above turned-out to be true when the Capolongos welcomed their son, Michael, into their lives. But Robert and Theresa have been colored with the kind of wisdom only families touched by a rare disease could ever understand: what it means to fight every day for your own child’s life.

At four-years-old Michael was diagnosed with Duchenne Muscular Dystrophy. Duchenne is a 100% fatal, genetic disorder that affects 1 in 3,500 boys and 10,000 to 15,000 people in the U.S. This terrifying degenerative disease takes the lives of boys by their 20’s by inhibiting dystrophin, a protein that is essential for muscle cells to survive.

Michael, who just recently celebrated his 9th birthday this May, has been forced to learn mature lessons that  go well beyond his times tables and ABCs. He’s learned that if he doesn’t do his stretches every evening, he’ll wake-up with terribly tight legs the next morning. He’s learned to avoid staircases in fear that they’ll damage his muscle cells. He has also learned that the time he spends with his parents and siblings, Victoria Rose and Bobby, are what get him through these pains.

His parents are also adapting to a new world, one where they are compelled to travel to pediatric hospitals outside of their home state. They look into alternative therapies and miss work to attend the latest Duchenne research conferences and conventions. Their friends and family were right: it’s not about you anymore, it’s about them.

Robert, an NYPD Sergeant, and Theresa, a nurse in the Neonatal Intensive Care Unit at Staten Island University Hospital, have dedicated their lives to protecting and providing for their local New York community. Now, they are the ones in need of support.

That’s why together, they founded Michael’s Cause, a non-profit that raises awareness for Duchenne and directs funds to research for new treatments and a possible cure. Through these efforts, Michael has become more than his disease. He is helping his parents further Duchenne research so that he and the thousands of boys affected by this disease can live fuller and longer lives.

Robert and Theresa hold onto a truth that any parent sharing their fight knows: that by having Michael, a child with a rare disease, they gave birth to hope. Through Michael’s Cause, the Capolongos aim, every day, to give researchers and academia the fuel they need to change the course of this rare disease for good.

For more information on the Capolongos and Michael’s Cause, or to donate, please visit http://www.michaelscause.org/ and follow on Twitter @MichaelsCause1, Facebook at Michael’s Cause and on crowdrise at https://www.crowdrise.com/michaelscause.

 

 

Michael’s story was provided by the Capolongos family. NORD is happy to support them  by sharing their story on this website. 

If you would like to share your rare story, please visit rarediseases.org/patient-stories and fill out the form provided! 

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