Beating the odds
Published: March 20, 2006
Matthew Blake turns 40 this month. For most people it would just be a birthday. For Blake, it’s a miracle — his second.
Complications from Marfan syndrome almost killed him when he was 18, and he’s been lucky to survive a half-dozen surgeries since then.
“I’m feeling good, a little tired,” said Blake, who lives in Sidney. “All I wanted to do was see my kids grow up happy and healthy and that’s what I’ve done. I live every day to the fullest and I just love life.”
The inherited disease took his father at age 33 and his brother at 35.
Marfan syndrome affects connective tissue and weakens artery walls, according to the American Heart Association.
It makes some people tall and agile — the lanky Blake stands 6-foot-6 — but forces them to be cautious about doing competitive and contact sports. It affects one in 5,000 Americans, some more severely than others.
On Thursday, his birthday, he’s planning to go to Pizza Hut to celebrate, and he’ll probably dine with his mother as he does several days a week.
Blake’s mother, Shirley Turner of Jefferson, credits a number of things for Blake’s long survival: Modern medicine, a special valve on his aorta, a life-saving trip to Texas 20 years ago funded by local people and the Whitefield Lions Club, and a miraculous recovery from a vegetative state.
Blake, in turn, credits Turner with always being there for him. “My mom’s been by my side during every surgery,” he said.
“I’ve had six open heart surgeries either in Portland or Texas, and the last one was in Massachusetts at the Lahey Clinic about a year and a half ago. It was the hardest one because I’m getting older.”
Blake has lived long enough to watch his three children grow up, and to hold his grandson, Ashton, now 15 months old. Blake also has survived two years beyond the 20 years his heart valve was expected to continue working.
As a 19-year-old, Blake made headlines in the Kennebec Journal in a story headlined ” ‘Miracle Kid’ fights for life.”
The story details his struggle after an aortic aneurysm ruptured in October 1984. During emergency surgery to repair the aorta in Portland, he suffered a massive stroke that left him in a coma.
“He barely made it through surgery,” said Turner. “They told me he was a vegetable. Then he started waking up.”
That was weeks later.
“When I woke up, I couldn’t walk or talk. I didn’t know my ABC’s,” said Blake, who had taken college-preparatory courses at Gardiner Area High School before graduating in 1984. “I had to relearn to walk and talk.” His raspy voice resulted from when his voice box was rebuilt. “The way I talk now is different,” he said.
Blake’s health remains fragile, and Turner, a registered nurse for 50 years, says it is deteriorating.
“There is no way anybody would have taken bets you’d make it to 40 years old,” she tells him frequently.
Blake spent a dozen years working with mentally handicapped and challenged adults in Gardiner and Augusta as a developmental trainer’s assistant with Uplift Inc. He retired after he was hurt in a car crash in 2000.
“I qualify for disability,” he said. “My kids are growing up and getting older and I don’t need to work as many hours any more.”
He’s able to take care of himself and frequently sees his physician, Dr. Roy Miller of Sheepscot Valley Health Center, and an Augusta cardiologist.
“I’ve about outlived a lot of my cardiologists,” he said.
His children visit a lot.
Blake’s son Derek, 20, who lives in Augusta, comes every other night after work.
“I just go to check up on him,” Derek said. And Blake is looking forward to seeing his daughter, Heather, graduate from Cony High School this June.
On good days, Blake volunteers his services as a driver with Kennebec Valley Community Action Program. “I’ve got a lot of friends in the system,” he said. “I like to talk and I like to drive,”
Blake is grateful his children were spared Marfan syndrome. The National Marfan Foundation, dedicated to improving the lives of those with Marfan and related syndromes, says a child of a parent with Marfan syndrome has a 50-50 chance of inheriting the syndrome.
His brother’s children weren’t as lucky, but they’re doing well.
“They live in Texas by great hospitals,” he said.
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