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Heartbreaking diagnosis becomes life-changing mission

On February 2, 1995 the lives of Paul and Alison Frase were changed forever. As a defensive lineman drafted out of Syracuse by the New York Jets in the sixth round of the 1988 NFL Draft, Frase was living his dream. Two years earlier, he had married Alison a music business professional who had managed an internationally known rock band.

But their future was shifted in an instant when their first child, son Joshua, was born, and soon diagnosed with the very rare and fatal disease, Myotubular Myopathy, a condition where skeletal muscles don’t form to completion. It causes those stricken to be unable to walk and ultimately for their bodies to be unable to support the weight of their own bones. Most patients succumb to respiratory illness because they are unable to cough to clear secretions from their lungs.

Paul and Alison were initially told that Joshua likely wouldn’t survive more than a few weeks. Twenty-four days later he was discharged from the hospital. At that point they received this less-than-encouraging directive, “If he’s still alive in a year, bring him back and we’ll re-evaluate.”

Joshua defied the odds. He survived that year and many beyond. And he didn’t just survive, he thrived. Myotubular Myopathy doesn’t affect cognitive ability and Joshua became a straight-A student and member of the National Honor Society. He attended school in a wheelchair and used a touch-screen computer to take notes.

When sitting became impossible, his parents wheeled him from class to class on a stretcher.

But all of those years were a balancing act.  The Frases refused to accept the grim circumstances without putting up a fight. While consumed with the day-to-day realities of raising a child with very serious needs, with the help of former teammate Pat Kelly, they also launched The Joshua Frase Foundation to raise money and awareness in trying to find a cure for the disease.

And critical decisions had to be made. With Joshua needing round-the-clock attention, Paul initially considered leaving the NFL. But Alison was the pragmatist. Although it was nowhere near the money players receive today, they needed the NFL check and the benefits that came with it to offset the costs of Joshua’s care which ran close to $200,000 annually.

“We were focused on survival,” Paul said.

And things were even more complicated than that. Paul spent his first seven seasons in the league with the Jets, but by the time Joshua came along, his situation was much more unstable. Paul was considering chiropractic school and he and Alison had relocated to Dallas. Then, two weeks after Joshua was born, Paul was selected by Jacksonville in the expansion draft and he went off to Florida. After two years of Paul commuting, Alison picked up and moved everyone to Jacksonville – just in time for Paul to sign with Green Bay where he spent the 1997 season before heading to Baltimore in 1998 where he played his final season.

All of this left Alison alone to manage everything for the majority of the year, much of which included hands-on medical care for Joshua. But, their family pulled together and Alison’s mother left her home in New York to move to Jacksonville to help with her grandson. And it was her involvement that proved to be a turning point.

While watching the news one day, Alison’s mother saw a segment about Dr. Anthony Atala who was doing genetic research along the lines of what the Frases were looking for. They contacted him and he is now the head of the research team at the Wake Forest Institute for Regenerative Medicine, originally funded primarily by the foundation (although they have had assistance over the years from organizations like the Muscular Dystrophy Association) and which is now preparing for clinical trials based on their success in reversing the disease in test animals. If everything comes to fruition, one injection will repair the damaged DNA.

This breakthrough development may affect the Frases personally on another level. Typically males are affected by the disease while females are the carrier. The Frases’ younger child is their daughter, Isabella, who both Paul and Alison describe as “wise and compassionate beyond her years.”  When Joshua, who succumbed to the disease in 2010, was posthumously awarded his high school diploma, it was then-12-year-old Isabella who accepted it for him in front of a crowd of 5,000 people.

Now Isabella’s future and the future of the children her parents say she is already planning to have someday may be impacted by the work they have done.

Frase himself has come a long way since those early days in the NFL. He admits that as a young player, charity and community work was more of an afterthought. He would happily accommodate requests from teammates or retired players to appear at events they were hosting, but didn’t carry those types of commitments into his own life.

But he now has one simple message. “There’s a story about filling the bucket. Fulfillment comes when that bucket’s full. When I sacked (Miami Dolphins quarterback) Dan Marino the year he had the least amount of sacks I jumped around like a fool for about four seconds. But that didn’t make me who I was. That didn’t fill up my bucket. That doesn’t give you fulfillment in terms of the soul. The rush of the adrenaline, that’s fulfilling for a second. But, if you’re looking to have a complete body, mind and soul experience, you better serve others.”

For more information about Joshua’s story and Myotubular Myopathy:

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