Monday, March 9, 2015

North Haven boy, 9, spearheads ‘Hunter’s Heroes’ and a message of hope

 Hunter Pageau. Register photo - Kate Ramunni

By Kate Ramunni
Register Staff
NORTH HAVEN >> There are no foundations, no telethons, no support groups for Spinal Muscular Atrophy with Respiratory Distress.
That’s because there’s only about seven dozen people in the world who have it. But 9-year-old Hunter Pageau isn’t letting that stop him from spreading the word about his incredibly rare condition.
It affects less than 10 people in the country and about 80 worldwide, his mother Sharon said, and Hunter is the only person in Connecticut who has it. But from his attitude, you would never think there’s anything wrong with him.
“I’m not hopeless and helpless. I’m hopeful and helpful,” the articulate fourth-grader says. Because of paralysis, he zips around in an electric wheelchair he operates himself, and he’s also connected to a ventilator, but that hasn’t dampened his spirits or decreased his desire to spread his message: never give up.

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