JACKSONVILLE, Fla. -- Mornings are the most difficult for Paul and Alison Frase.
For the first time in 16 years, the sounds they would listen so intently for, are gone. "No matter what the noise level was in this house, I could hear him," Alison Frase said.
Their son, Joshua Frase, died effortlessly on Christmas Eve in his sleep, when his heart simply stopped beating. But this isn't a story of a young man who died. It's the story of one who lived.
"Fifteen years of life overcoming obstacle after obstacle after obstacle," Alison Frase said.
When Joshua was 11 months old, he already had beaten the odds. "At delivery, he was just gone and they told me he would not survive the day," she said.
But he did, and at 3 and a half months was finally diagnosed with myotubular myopathy, a severe muscle disorder with only 50 known cases around the world.
"The doctors said if he makes it to his next birthday bring him back and we will re-evaluate. That was the beginning of our mission," said his mother.
That mission: Find a cure for a disease they were told would likely take their son before his second birthday.
As a defensive end for the Jacksonville Jaguars, Paul Frase used the NFL platform to enlist anyone who would help. He credits Jaguars Chairman and CEO Wayne Weaver, Weaver's wife, Delores, and his coach Tom Coughlin as pillars of Joshua's early support system.
"Coach Coughlin, on the field he eat slept and drank football; he was a miserable person to be around," joked Paul Frase. "But Tom and (his wife) Judy sat with us at the hospital for hours. You really saw his compassionate side."
The Coughlins and others helped them to frame the Joshua Frase Foundation. And as Joshua grew, well past his second birthday, into grade school, middle school and ultimately high school, he became a constant contributor.
Physically, he couldn't stand and had to be carried everywhere by his parents. But mentally he stood above just about everyone with a GPA of 4.2 and the highest math average in his class.
"He just had the most amazing mind. He was a member of the National Honor Society, studying biotechnology because he wanted to become a scientist to cure his muscle disorder," said his mother. "Even as trapped as he was in that body, he had so many dreams."
His body often betrayed him. "There was probably seven or eight times at home in our bed that we had to bring him back. And many at the hospital," Paul Frase said.
"Oh yes, many at the hospital," added Alison Frase.
But his will never did. "They'd say 'this is it. Call your family'. He proved them wrong time after time. He had such a strong will to live, a strong tenacity to live," she said.
Joshua wanted to be the first person to undergo clinical trials, which will start soon due almost entirely to the research dollars his Foundation raised - $6 million to date.
"His legacy is just beginning and there's a lot of work to do," said Alison Frase.
The Frases believe that legacy will be a cure, but his sister Isabella said there is something more basic people can take from her big brother's life. "He never complained, actually," she said.
He just saw beyond his physical circumstances. "Joshua wasn't just any person, he was really special," she said.
No one is ever prepared to lose a brother, or a son. But while some may have seen a boy who was dying, Joshua and his family saw one who was living. And they hope that is a legacy as well.
"Every night we'd look at the stars. I'd look at him and he'd look at me and then back to the stars," said his father.
"I would encourage families to slow down. Joshua's life was all about relationships. That's something we can all learn from."
To learn more about The Joshua Frase Foundation and the ground breaking work it is doing, please visit joshuafrase.org
First Coast News