Retired NFL player Paul Frase, ex-wife write book on loss of son. 'Story is one of hope.'

Paul Frase, a graduate of Spaulding High School in Rochester, spent 11 years in the National Football League as a defensive lineman with four teams. No longer chasing down NFL running backs, Frase in recent years has tackled a deeply personal project, which is highlighted in a book he co-wrote with his ex-wife, Alison Rockett.

While “Game Changer” deals peripherally with the Barrington native’s football career, the real nuts and bolts of the book is much more powerful, raw and emotional. The couple’s son, Joshua Frase, died in 2010 before his 16th birthday after a life-long battle with myotubular myopathy (MTM), a rare congenital muscle disorder. It affects an estimated one in 50,000 newborn baby boys, who rarely live into adulthood, according to the National Institutes of Health.

“Game Changer” is about Joshua’s life, his death and his parents’ ongoing efforts to find a cure for the disease through the Joshua Frase Foundation. It is also about the painful toll MTM and Joshua’s death took on the family. Released late last year, the book is available online from Amazon and Barnes & Noble.

Paul grew up in Barrington and starred on the football team at Spaulding High School that won a state championship in 1982. He played football at Syracuse University on scholarship, and then had a lengthy career in the NFL with the New York Jets, Jacksonville Jaguars, Green Bay Packers and Baltimore Ravens (1988 to 1998).

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Writing the painful story of their son's struggle for years

After Joshua was born in 1995 and was diagnosed with MTM, Paul began to keep a journal. “They say journaling or writing can bring healing,” Paul said. “I started writing about my feelings about Joshua, his disease and how rare it is within two or three years after he was born.”

Alison started doing her own journaling seven or so years ago, and at that time Paul said it was time to write a book. “I had excerpts from 20 years ago,” he said. “I started compiling them.”

He told her, “We’re going to write Joshua’s story. It’s powerful. It brings hope.”

They got the idea for their approach to the book from a 2010 memoir by James Crowley entitled “Chasing Miracles: The Crowley Family Journey of Strength, Hope and Joy.” The book is about the two Crowley children who were diagnosed in 1998 with a severe neuromuscular disorder glycogen storage disease type II, also called Pompe disease, and the family’s journey to try and find a cure for that disease.

“They wrote it back and forth,” Paul said. “We figured we would do the same. And quite frankly, two people, even though they’re married, they experience things totally differently. There’s obviously a different perspective. You experience things differently. You cope differently. You grieve differently. I was like, ‘Just tell me what to do to keep my son alive.’”

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Alison, for her part, felt like the doctors weren’t going to tell them how to cure their son because they have no idea. “We’re going to figure it out,” Paul said. “It was definitely a team effort.”

Story of 'hope and inspiration' took persistence to publish

Although the idea to write the book took flight seven years ago, Paul said, “I had always in the back of my mind felt that Joshua’s story would help many, many people. Alison knew that Joshua’s life was not in vain. We knew that Joshua’s story could be a hope and an inspiration.”

It wasn’t easy getting someone to publish the book. They were turned down 20 times before they finally found a publisher. Frase said he was inspired by Jack Canfield’s “Chicken Soup for the Soul.” Canfield was rejected 140 times before he found a publisher, which eventually developed into the lucrative “Chicken Soup for the Soul” series brand.

“That gave me hope,” Paul said. “There’s somebody out there that will help publish.” That somebody was Southern Yellow Pine Publishing, a small outfit in Tallahassee, Florida. The book was released Nov. 22, and the first printed copies released in early January. It is also available as an eBook.

The story’s main message is one of hope. Paul and Alison started the Joshua Frase Foundation when their son was still alive to fund research for a cure for MTM. They continued to do so after his death. “We actually questioned why we continued to run the foundation and support the research,” Paul said.

Progress in the fight to beat myotubular myopathy

What kept them involved was their foundation was making some headway. Pre-clinical trials were held with dogs with MTM that were expected to be dead in 17-22 weeks. They were given one shot of gene-transfer therapy and they’re still alive nine years later. “They’re running around like normal dogs,” Paul said. “It’s absolutely amazing.”

That has allowed movement forward with humans in regards to gene-transfer therapy. There’s been success and there’s been failure. “It’s amazing to look at the possibilities and the hope it brings with it focusing on those possibilities,” Paul said.

The breakthrough occurred in 2008 with a Canadian brown labrador named Nibs. After setbacks and heartache, Nibs was the torch lighting the way forward at an MTM dog colony in North Carolina where research was conducted to further gene-transfer therapy.

Paul recalls an early foundation event at Faneuil Hall in Boston, the third or fourth year. There was a 2-year-old boy, decked out in black slacks, white shirt and a little plaid vest.

“It was amazing to hold him that night at the event,” Paul said. “He passed away six months later. It’s the knife through the heart that really drives you to try to avoid that feeling again for the parents, for the families. It drives you to find an answer.”

They lost their marriage but 'have learned and moved on'

MTM cost Paul and Alison their son’s life, sending both into dark places, racked with pain and guilt. Alison experienced extreme guilt that she was responsible for her son’s death. Paul’s resentment and guilt drove him, for a time, to drink to excess. It also, indirectly, cost them their marriage.

“We are still partners in Isabella (their daughter) and the foundation, but unfortunately we parted ways,” Paul said. “We focused on life with Joshua for 16 years just keeping him alive. It’s difficult when you don’t nurture a relationship for 16 years. Marriage is tough even without something like this. Obviously we had to accept what life dealt us. We definitely have learned and moved on. The story is still one of hope.”

When Paul reflects where the MTM research is today compared to the 1990s, he feels in an entirely better place.

“We’re light years ahead from where we were in 1996,” he said.

This article originally appeared on Fosters Daily Democrat: Paul Frase, Alison Rockett write 'Game Changer' on loss of son Joshua