Mainer dies while waiting for heart As a boy he inspired ‘Spin Skater’ story

WHITING – The man from Washington County who inspired a popular children’s book and whose efforts to receive a heart transplant never came to fruition, died Monday at a Boston hospital, according to his mother.

Joshua Barker, 24, died around noon of kidney failure at Brigham and Women’s Hospital. He had been waiting to receive a mechanical heart because of complications from cardiomyopathy, an enlargement of the heart.

“He was very comfortable,” his mother, Brenda Gay Barker, said Monday afternoon. “He was brave and valiant.”

In January, the Bangor Daily News ran a story that described Barker’s quest for a new heart and how his determination as a child sparked an outpouring of support that stretched well beyond Down East Maine.

The story began: “Once upon a time – 10 years ago, to be precise – a teenager living in Trescott named Joshua Barker simply loved to ice skate. While other teens his age focused on video games and cell phone calls, 14-year-old Joshua’s passion was the ice.”

“He used to beg me every day to take him to St. Stephen [New Brunswick] to skate,” his mother recalled. “I told him, ‘Skate on the frog pond in the front yard,’ which really wasn’t much more than a ditch.”

“It was all about personal freedom,” Joshua Barker said at the time. “I’ve never been athletic, but on that ice, I was free.”

So he skated on the frog pond. But with such limited space, what he really did best was spin. On that tiny patch of ice, he became very good at spinning.

Quite frequently, as he was passionately spinning along, Linda Godfrey from Eastport would pass by the East Stream Bridge on Route 189 and she saw the tiny frog pond. “I never actually saw Joshua’s face,” Godfrey said recently. “He was always just spinning.”

The sight of the teenager spinning away on that tiny spot of ice prompted Godfrey to write a children’s book titled “The Spin Skater of Pinpoint Pond.”

“The idea is that a young man with such a small space spins because that’s all he can really do,” she said. He simply spins and spins, the story says, teaching the lesson that even if you are from a really small place and have only a really small space, if you focus on what you do well, you too can be a winner.

Godfrey said Monday it had been a blessing to witness Barker’s courage.

“Today I join with so many other friends of Joshua and his family that have been touched by his life and saddened by his death,” Godfrey said. “We were all rooting for him these past months as his hopes for a new heart had its ups and downs.

“Joshua’s real-life story captured hundreds of others as he and his family used courage and perseverance to do everything to extend his life,” Godfrey said. “Joshua will forever be The Spin Skater of Pinpoint Pond. I believe his spirit is now as free as it was a decade ago on his little skating place.”

Barker, who outside of school worked in blueberry fields and at Helen’s Restaurant in Machias, suddenly became ill while attending the chef’s program at the University of Southern Maine in 2001 and was diagnosed with cardiomyopathy.

For five years, Barker survived on a strict regimen of medications. “It was a fairly normal life,” his mother said. But in 2006, Barker had a major heart attack and his family began the process to obtain a new heart. He was rejected once by Massachusetts General Hospital’s transplant team and then a second time by Brigham and Women’s Hospital’s transplant team. The rejections stemmed from a host of medical problems that made him a poor candidate for the procedure.

In May, he was airlifted from Machias to Eastern Maine Medical Center in heart failure. His mother refused to accept the inevitable and her persistence was rewarded when Brigham and Women’s Hospital’s agreed two weeks ago to install a mechanical heart.

Barker had been in Boston for a week when his kidneys failed.

His struggle inspired hundreds of Maine people, many of whom wrote to Barker, sent get-well cards or contributed to his medical expenses.

Earlier this year, Barker spoke about his health. “I’m weak but very optimistic,” he said. “When I get this new heart, I should be able to live 90 percent of a normal life, and that means returning to skating. Hope, possibilities and dreams. Nothing is impossible”

Funeral arrangements for Barker were incomplete, according to his mother.