Hunter Pageau of North Haven is defying the odds. Of the few dozen children in the world with his extremely rare genetic disease, most only live to see one Christmas. Hunter Pageau will celebrate his ninth birthday tomorrow, and thanks to the support of his community, will wake up to some life-changing gifts under his Christmas tree. Donations can be…
NORTH HAVEN -- Hunter Pageau’s Christmas wish list looks a little different from most kids. Next to the gifts that any other nine-year-old boy would want – a Hot Wheels RC Street Hawk, for one – are items like mechanical arms, a portable wheelchair ramp, and a specialized medical bed.
Hunter is one of only dozens of children in the world born with a rare and incurable genetic condition called Spinal Muscular Atrophy with Respiratory Distress, or SMARD. Most never make it past their first Christmas.
“He’s one of ten children living in the U.S. with SMARD,” Hunter’s mom Sharon explains. “He’s completely dependent on life support for breathing, he’s partially paralyzed and utilizes a wheelchair to travel.”
It’s a condition so rare, Sharon says, that there are no established support groups for SMARD, making it a lonely struggle for the Pageau family. None of the items on Hunter’s Christmas wish list would be covered by insurance, and Sharon – who provides round-the-clock medical care for her son – has struggled to negotiate with utility companies over the energy costs to keep Hunter’s life-saving ventilator powered at all times.
A few weeks ago, however, Hunter was invited to speak at the Christmas tree lighting on the North Haven green.
“I delivered a message of hope,” said Hunter, “and I feel like I really did touch their hearts a lot.”
He did.
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So much so, that the North Haven Police Union decided to buy Hunter his mechanical arms. Tobin Family Chriopractic pitched in to buy the portable ramp. And the community is coming together to raise funds for the specialty medical bed, which costs $9,000.
The Pageaus are overwhelmed with gratitude.
“It’s been just amazing,” said Sharon. “We’re just really touched and grateful as a family. For anyone to allow God to love another through them…that’s what Christmas means to me. So Christmas for us has been every day this month.”
“My Christmas wish for the world is for everybody to be positive and to never give up,” said Hunter. “And love each other.”
For anyone wishing to help Hunter, his mother Sharon can be contacted at fitforlifesja@hotmail.com and donations may be sent to People's United Bank, C/O Hunter Pageau Trust, 79Washington Ave., North Haven, CT 06473.
