New Hope for North Haven Boy Battling Rare Disease [NBC]

March 24, 2015

NBC Connecticut

Nine-year-old Hunter Pageau shouldn’t be able to pronounce the disease he’s had since birth, yet it rolls off his tongue too easily.

He calmly recited the name of his illness Monday: spinal muscular atrophy with respiratory distress, or SMARD for short.

State Senate Minority Leader Len Fasano, State Rep. Dave Yaccarino, and Michael Freda, the first selectman in Hunter’s hometown of North Haven, gathered with the boy and mother at the state capitol on Monday for an occasion worth celebrating.

The Connecticut Government Administrations and Elections Committee has voted to approve a bill that would establish a “SMARD Awareness Day” in the Nutmeg State.

It’s important, they say, because the disease usually proves deadly for children within their first year of life. It’s also so rare – only about 80 people have it worldwide – that there are no support groups, not even online.

The local recognition isn’t the only good news recently for Hunter, who has spent his life constantly dependent on a ventilator, a wheelchair and life support.

“There has been a 450 percent improvement for SMARD symptoms,” Hunter rejoiced at the Capitol.

And, best of all, just days ago, Italian researchers made an apparent breakthrough.

“Prior to this news, there had been no clinical proven avenue or path to a cure,” explained Hunter’s mother, Sharon Agli-Pageau. “Human clinical trials will be offered in the near future, and we have every intention to be there to participate.”

Those trials might require a trip to Italy, but this brave young man is no stranger to trials. Hunter is confident that local awareness coupled with progress from afar means a cure could be near.

“Always have hope, love and never give up,” he said.

You can donate online to help Hunter fund a trip to Italy when human trials get underway.