Carter is an eight-year-old boy from Gorham, NH. He is diagnosed with Joubert Syndrome, a rare genetic disorder that affects one in 100,000 newborns. He is nonverbal and is unable to walk. And he needs a kidney.
Jessica, Carter’s mom, has been a tireless advocate for her son, especially since he received his diagnosis at five days old. Part of the charge she has taken upon herself is to introduce as much normalcy as she can into her little boy’s life—especially when it comes to getting out into the community.
“It’s been very hard to find things that he enjoys,” she says. “He has significant sensory issues and it can be overwhelming outdoors with all the stimuli. He likes to be outdoors, though if there are too many kids screaming, or if somebody talks to him too much, then he gets a little overwhelmed and then he’ll start screaming.”
Add to that, there’s the simple fact that many playgrounds simply do not have the accessible equipment capable of accommodating a child with Carter’s needs. This is
particularly true in the North Country, where there are few funds available to install this specialized, high-cost equipment.That’s where CMF Kids comes in.
Last year, Crotched Mountain Foundation and CMF Kids partnered with Milan Village School in Milan NH to open a new inclusive and accessible playground featuring specially-designed adaptive and sensory-friendly equipment like a non-transfer swing for children who use wheelchairs, an adaptive climbing structure, a sensory chair, an accessible whirl, and sensory musical equipment including a xylophone, bongo drums and wind chimes.
The project was made possible through a $50,000 CMF Kids resource investment.
“The new accessible and inclusive playground is a perfect example of the Kids vision,” said Melissa White, Executive Director of CMF Kids. “We are excited to help our friends at the Milan Village School bring the joy of play to all children. There are more than 30,000 children identified in New Hampshire Public Schools as having a disability. Creating inclusive and accessible play spaces means all children of all abilities are able to play, learn and grow together.”
“He loves to swing,” Jessica says. “It’s so nice to go so he could do something he enjoys so much. And it’s important that it’s a swing made for a boy his age, not one of those baby swings. As a mom, it’s important to me for him to have that type of normal experience.”
Because community is important and no one knows that more than Jessica. Despite the relative scarcity of resources in the North Country, Jessica sees a great advantage to the closeness of those towns.
With CMF Kids able to supply needed support and partnership with economically disadvantaged school districts to help improve special education outcomes, Crotched Mountain is able to build on the strong, neighborly culture that makes up the bedrock of northern New Hampshire.
“Being in such a small area, Carter won’t get lost in the system,” Jessica says. “He won’t be just a number. I know that my son is getting what he needs.”
What Carter needs now is a kidney. Joubert syndrome is known to gradually weaken the kidneys and time is ticking. The school support, the specialized attention, and, most recently, the new accessible playground in Milan are wonderful gifts.
Yet there is another gift to give to young Carter. It is the most special present of them all: the gift of future, the gift of hope, the gift of life.
Spread the word far and wide! Carter needs a kidney. To learn more please reach out to Jessica at jessie_03584@hotmail.com.