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This Connecticut 9-Year Old Will Melt Your Heart

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Nine year old Hunter Pageau, a 4th grader from North Haven, Connecticut is one of the most inspirational people I have ever met, young or old. Hunter is full of love and hope even though he is on life support 24-7. All he does is smile and remains hopeful for a cure for his extremely rare disease called SMARD. SMARD is Spinal Muscular Atrophy Respiratory Distress. He is one of only about dozen cases in the United States, around the world there are about 80 diagnosed patients. Because it is so rare there is not a support system, and much isolation, so he and his Mom Sharon are building awareness around it for the rest of the world so that they can all find each other and build hope. Hunter is a global advocate to help finding a cure for this disease, he is working on getting a bill passed in the Connecticut legislature to get people on board to understand SMARD. After a normal pregnancy, Hunter was born without a whimper, and his Mom said at that moment she knew something was wrong, he was laboring to breathe. Because his condition was so rare it took about a year to diagnose him and at 8 month he underwent a tracheotomy which is his life support today.

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Hunter lives in his wheelchair and continues to talk about his disease every where and any where. When you hear him speak you hear a child who is well beyond his years. He is bright and articulate and full of love. He says “I am not hopeless or helpless. I am hopeful and helpful!” The family has had financial hardships to care for him, losing their home and their business to just stay focused on him and bring him as much joy as possible and he gives it right back. Sharon is now trying to get Hunter to Italy as there are human trials that will be getting underway in Milan that could provide a link to a new future for Hunter. An online site has been set up to help him get there and it is HERE.