North Haven boy raising awareness of his extremely rare disease

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NORTH HAVEN, Conn. (WTNH) — A nine-year old North Haven boy has the rarest of diseases. Hunter Pageau has SMARD, Spinal Muscular Atrophy with Respiratory Distress. There are just about a dozen cases in the U.S, and about 80 worldwide.

Pageau can’t breathe on his own. At eight-months old he had a tracheotomy, and that is his life support 24/7. To date he has had at least 30 surgeries. Though his family has constant financial hardships, this bright, articulate child is full of hope.

“What makes me so happy is that I went to the Capitol and testified for there to be a law for a SMARD Awareness Day here in Connecticut, so I’m very happy that I am raising awareness,” said Pageau.

“I think I’m going to change the world because since I’m raising awareness for this disease so much, I think a lot more people will know about it and maybe perhaps start their own SMARD Awareness Day in their state,” he said.

“SMARD is such an extremely isolated, globally invisible disease that is the problem,” said his mother, Sharon Agli Pageau. “There are no formal organizations set up to assist families with SMARD to communicate or connect, so we ourselves created this online access on Facebook to be in communication with each other, and that essentially is all we have at our disposal to share information.”

“I share a very empowering message of have hope, love, and never give up, so I always have a smile on my face because I never give up and do my best every day,” said Hunter.

The family hopes that they can afford to get Hunter to Milan, Italy where human trials are set to begin on patients just like him. To donate and help him get there, click here.

Copyright 2020 Nexstar Broadcasting, Inc. All rights reserved. This material may not be published, broadcast, rewritten, or redistributed.

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