North Haven’s Hunter Pageau inspires SMARD Awareness Day [NHRegister]

July 27, 2015

New Haven Register

NORTH HAVEN >> Usually there’s not much to look forward to in the middle of winter, but next winter will be different for North Haven resident Hunter Pageau.

The 9-year-old is preparing to mark the first SMARD Awareness Day in Connecticut on Feb. 10. This week he sat with Gov. Dannel Malloy as the governor signed legislation that officially designates the day each year to raise awareness of the very rare disease from which Hunter has suffered since birth.

Hunter must use a wheelchair and a breathing tube, but that hasn’t slowed down the gregarious, intelligent youth. He won the hearts of many here last December when he was chosen to flip the switch on the town’s Christmas lights and since then has been embraced by the community. Several fundraisers have been held to help his family with the never-ending medical expenses related to his condition, many of which are not covered by insurance, and the North Haven Police Department made him its first Junior Officer.

State Senate Minority Leader Len Fasano and Rep. David Yaccarino, both R-North Haven, introduced the legislation that passed through both houses. On Wednesday, Hunter and his mother, Sharon Agli-Pageau, were there to see Malloy make it official.

“We are overjoyed, proud and grateful,” Agli-Pageau said. “We want and hope to continue to make forward progress in helping all SMARD families via being a strong and positive voice.”

“Hunter is truly an inspiration to all of us,” Fasano said. “By increasing awareness, Connecticut is taking a major first step to help families impacted by SMARD find new support. There is very little awareness about this disease currently, leaving many families in the dark.

“SMARD Awareness Day is really about finding and embracing hope and increasing support for all families affected by the disease today, as well as for those who will be impacted in the future,” he said.

“I’m proud to have met Hunter Pageau — his determination is inspiring,” said Yaccarino. “Like most people, I had never heard of SMARD before meeting Hunter. Thanks to Hunter’s dedication, I am extremely proud to support this bill and call Hunter and his family my friends.”

It’s the latest in what has been an exciting year for Hunter, whose motto is “I’m not hopeless and helpless. I’m hopeful and helpful.” After the tree-lighting ceremony in December, his story began to circulate through local media, which brought his disease attention it had sorely lacked because of its rareness. Spinal muscular atrophy with respiratory distress afflicts about a dozen people in the United States and less than 80 worldwide. It’s been difficult finding doctors to treat him because SMARD is so rare, Agli-Pageau said.

There has been renewed hope for a cure after Italian researchers earlier this year announced a breakthrough in treating the disease and Hunter is hoping to take part in its clinical trials.

“The Italian researchers and physicians continue to move through their necessary protocols towards the next step of opening clinical trials,” Agli-Pageau said. “This process takes awhile, as there are many complexities and variables involved, and we continue to be patient and prepare ourselves to journey over there.”

A fund has been established to help with expenses associated with traveling to Italy, as well as for the family’s daily expenses. One of those expenses recently was the replacement of the engine in their specially-equipped van that transports Hunter and is equipped to accommodate not only his wheelchair but his breathing devices. Without the van, Hunter was relegated to staying home while they figured out how to pay the multi-thousand-dollar bill, which was totally unexpected, Agli-Pageau said.

The money was raised to repair the engine, as well as the lifting device, and now they are hoping to replace the tires. To donate to the vehicle fund, visit There also is a fundraising page to help Hunter get to Italy for the clinical trials at

“It means so very much to us and we are so very grateful,” Agli-Pageau said. “Our family is truly moved and grateful for the loving support shown by our community, and together we believe we can continue to make the positive and needed changes for those facing immense hardships due to this aggressive disease. No family should ever have to face the extreme hardships our family has in battling this extremely rare disease, due to the disease being unknown. It is our truest hope to change that and create new opportunities for Hunter, all other SMARD children and those to come in the future.”