9-year-old North Haven boy tells state commission about rare disease [Record-Journal]

March 9, 2015

Special to the Record-Journal

NORTH HAVEN —The Pageau family of North Haven has been dealing with SMARD (spinal muscular atrophy with respiratory distress) for nine years. But they realize most people know nothing about the rare disease.

Nine-year-old Hunter Pageau, who suffers from the rare disease, and his mother, Sharon Agli-Pageau, spoke in front of the Government Administration and Elections Commission recently in support of a bill proposed by Sen. Len Fasano and Rep. Dave Yaccarino that would designate a SMARD Day in the state that will “recognize and bring awareness to SMARD.” Both legislators represent North Haven.

While the bill brings statewide awareness to the disease it doesn’t provide funding for the research that is necessary to develop a cure.

“This is the first step,” Yaccarino said. “Providing funding can be done at a later date.”

Hunter’s mother said the Jackson Laboratory in Farmington is the only laboratory that conducts SMARD research but there are currently no public funds available to support their activity to fight the life-threatening motor neuron disorder.

She began the presentation by appealing to the committee to pass the legislation that “will further our decade-long efforts to lessen the profound hardships faced by SMARD families.”

She introduced Hunter, “a true pioneer of SMARD,” who is the only Connecticut resident and one of just 10 in the U.S. afflicted with the rare disease.

Hunter spoke with conviction about his experience with the disease and how he has risen above it to succeed in school. “I am at the top of my fourth grade class and do not let my disease discourage me from being happy or following my heart and my dreams,” he said. “SMARD is not who I am. It is only a part of me, but not all of me.”

Hunter and his mother captivated the committee, which applauded at the conclusion of the presentation.

“We don’t usually allow clapping but we’ll permit it today,” said Rep. Ed Jutila, the committee chairman.

The committee members commented on Hunter’s presentation. “I have no idea of your disease, but to the extent we can help you, we’d love to do it,” said Rep. Rich Smith.
“That was a very moving testimony. Thank you for your strength and courage,” said Rep. Patricia Miller.

Yaccarino said the committee will most likely approve the amendment within two weeks and officially draft the legislation. After it is approved by the committee, it will be voted on in the House and Senate.

In a letter sent to the committee to advocate passage of the bill, North Haven First Selectman Mike Freda wrote, “I have seen very clearly the courage, perseverance, and hope that young Hunter Pageau has demonstrated and I hope that we can continue to bring more awareness to SMARD.”