MEREDITH — As a Lakes Region family comes to terms with a terrible diagnosis for their youngest member, two Meredith Center organizations are joining forces to provide a night of support. On Saturday, Oct. 20, the Wicwas Lake Grange and the Meredith Center Free Will Baptist Church are teaming up to serve a ham and bean supper, which will be held at the Grange Hall from 5-7 p.m.
Tickets cost $10 per person, there will also be raffles of gift baskets and a 50/50 raffle. Proceeds from the event will aid the LaFavre family of Tuftonboro, who, according to Diane LaFavre of Meredith, have been living a “long nightmare” since June.
The LaFavres’ ordeal began four months ago, when Isaac, their two-year-old, developed a lazy eye. They took him to an eye care office, which referred him to a neurologist. Before they could keep that second appointment, though, Isaac’s parents, Kourtney and Thomas, noticed shallow breathing when they checked on Isaac at night. They took him to Huggins Hospital, and he was taken by helicopter to Children’s Hospital at Dartmouth.
Isaac hasn’t been home since July. He has required ventilation to maintain effective respiration, and close monitoring to maintain safe blood pressure levels. He has also been transported from Dartmouth to Boston Children’s Hospital, and now back to Dartmouth, as teams of doctors tried to figure out what has been plaguing the young boy.
Around Sept. 1, they started to circle in on the ultimate diagnosis: ROHHAD, an acronym that stands for rapid-onset obesity with hypothalmic dysregulation, hypoventilation and autonomic dysregulation. It is exceedingly rare, with only 100 cases reported worldwide, and there is no known cause or cure. The disease is described as “life-threatening and life-limiting.”
The LaFavre’s best hope at this point is that doctors will find a way for them to manage Isaac’s breathing and blood pressure at home. Until they figure that out, both parents, as well as siblings Lily, Thomas and Calvin, have been staying with Isaac. Thomas, a police officer with the town of Tuftonboro, hasn’t worked in months and though other town employees have donated their sick time to him, the financial strain has added to an overwhelming emotional burden.
The Meredith Center organizations came together because Diane and Paul LaFavre, Isaac’s grandparents, are members of the church.
“When a member of the Grange or church family is hurting, the whole family hurts,” said Jeff Laliberte, pastor of the church. “One of the wonderful things we’ve seen in this community is a coming together – it really is a coming together of a community.”
Through emails, Kourtney has been keeping her extended family briefed. Her most recent detailed the complicated changes and challenges that her family will navigate in the coming days, months and years. She closed the email with an exchange she had with Isaac’s big sister.
“Our 10 year old asked the question, ‘Why did this have to happen to him? Why couldn't it have happened to someone bad instead?’ I let her know that nobody has an answer to that question. I also told her that I do know that Isaac came to us because he needed us. He needed a family that is strong, smart, and loving. He needs us and we are the perfect family for him. And being the wise soul that she is, she understood.”
Kourtney is writing a blog for people that want to learn more about Isaac and ROHHAD. It can be found at thestoryofisaac.wordpress.com. Those who wish to support the family but can't attend Saturday night's dinner may send a check, made out to the Isaac LaFavre Fund, to Meredith Village Savings Bank, PO Box 177, Meredith, NH, 03253.