Child with Rare Disease Addresses North Haven Rotary Club

Eight year old, Hunter Pageau, is handsome, bright, and anything but bashful. At a meeting of the North Haven Rotary Club recently, the very composed little boy sitting in a 400 pound wheel chair explained that the extremely rare paralyzing disease that he is burdened with is only a small part of who he is. The illness is labeled SMARD (spinal muscular atrophy with respiratory distress). He explained that there are under 100 documented cases worldwide of SMARD, and only a handful of children in the U.S. with this disease.  

After a brief introduction by his mother, Sharon Agli-Pageau, Hunter read a statement about himself that his mother had typed for him which was his original composition. With his father, Adam Pageau, standing beside his wheel chair, he read the manuscript flawlessly.

Following Hunter’s captivating reading, his mother delivered an emotion filled address to the club describing many of the hardships faced by her family. She emphasized that “Hunter is physically disabled only, minus any mental, behavioral, emotional or social disabilities.  He is a very normal little boy with extraordinarily unique physical disabilities/challenges, which he champions daily, despite those challenges.”  She said that Hunter is enrolled in the integrated day program at Green Acres Elementary School and has an active five year old brother, Cole, in kindergarten at Montowese Elementary School.

The mother explained that the family has resided in North Haven for four years, and she described many of the obstacles that face a physically challenged child when it comes to being included in a typical setting. Nonetheless, she said that she is pleased with the degree of inclusion that his school has provided. However, she pointed out that due to the rarity of the illness, “There are no formal organizations or support groups to assist our family with our vast challenges, which brought us to reach out to the Rotary Club for assistance."  

Ellie Mulligan, a special education teacher, who was Hunter's home bound tutor during his first grade year said, “Having been in the home 10 hours a week, for the entire school year, I truly understand what the family struggles with day in and day out having a medically fragile child. They are a very caring and loving family who I am happy to call friends.” Furthermore, as the adviser of the Interact Club which is sponsored by the Rotary club at the high school she added, “If the Interact Club can be of assistance, we will be glad to jump in and help with whatever the family needs.”

Indicating that her own son had agreed to be a Big Brother to Cole, Rotary Club President Debbie Volain pledged the club’s support for the family, both financially, and hands on where feasible. Arrangements would also be made with fire department volunteers to rebuild an old ramp. Finally, it was noted that a trust has been established to assist with the child’s medical expenses at Hunter Pageau Trust, People's United Bank at 79 Washington Ave., North Haven, CT 06473.