January 21, 2018
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Maine boy is one of 12 humans known to have rare genetic disorder

By Deborah McDermott, The York Weekly
Ioanna Raptis | The York Weekly | BDN
Ioanna Raptis | The York Weekly | BDN
Dakota Carter, 9, looks at his mother, Shannon, as she helps him into his chair. Dakota is one of 12 people known to be diagnosed with a rare genetic disorder, and the Carter family has been chosen to receive a new home from Habitat For Humanity York County, which is seeking volunteers for the project.

At a young age, not long after they graduated from York High School in 2007, Shannon and Charlie Carter had their son, Dakota, the oldest of their two children. He’s 9 now, a child with many medical and cognitive issues. One of only 12 known human beings to be diagnosed with a rare genetic disorder, he has been suffering from epileptic seizures since he was an infant, and just recently was diagnosed with heart problems.

And yet the couple smiles with abiding affection for each other, provides loving and appropriate parenting to 6-year-old Jordan, will absent-mindedly graze Dakota’s hand or ruffle his hair. “Hey buddy,” says Charlie when he came home one recent night after work, first to one son and then the other.

Shannon is mature if not beyond her years then certainly approximate to them — maintaining a calendar of myriad doctor’s appointments for Dakota here and in Boston, searching the internet for medical equipment grants, keeping tabs of the finances that come from running a family on a limited income with a very special special needs child.

Since Dakota was six months old, the family has been living in a second floor apartment, above Prime Storage on Route 1, surrounded by asphalt, no safe place to be outside, for Jordan to ride his bike. Dakota, wheelchair bound, must be carried up and down stairs.

But life is about to change for the Carters. It won’t be too very long until ground breaks on their own home just up the road in Wells, thanks to Habitat for Humanity York County. The Carters are the most recent family to be selected by Habitat, which with the help of volunteer crews will build a special house with handicapped accessible features on Quarry Road.

“When I got the call I said to myself, ‘Wow, this is really happening.’ There’s nowhere to rent, especially in York, let alone to purchase. Now, we’re finally able to have a house forever,” said Shannon. “It’s going to be hard to leave York, but it’s just right up the road not far. And this is going to be life changing for us.”

Most life changing of all will be the fact the family will have a home appropriate for all of their needs — but particularly Dakota’s. Shannon Carter said it was clear almost from the moment he was born that something was amiss — a low birth weight, jaundice, difficulty feeding. At six months, he saw a neurologist for the first time, at nine months he had his first seizure. And he was always sick with colds, ear infections, pneumonia. From a very young age, he’s received his food through a tube to his stomach because he can’t swallow.

By age 2, he was seeing a geneticist at Boston Children’s Hospital. “He had just turned 3 when they called and said he had a gene mutation” called UPF3B, said Carter, so rare there are only 12 known cases.

“It was an X-linked gene, which means moms can carry it,” she said. “I was tested and I do carry the mutation. But by then I was already pregnant with Jordan, who is fine, thankfully. Still, the fact that I carry the mutation, I said, ‘I did that to my child.’ Of course, you can’t blame yourself. That doesn’t get you anywhere. You have to do what you have to do.”

What’s she’s had to do is travel to Boston usually once a week with Dakota for doctors’ appointments, in an aging SUV that has more than 150,000 miles on it. In 2012, she mounted a crowdfunding campaign for a handicapped accessible van, but it fell shy of the $45,000 needed. The $15,000 raised is being held by Stratham, New Hampshire-based Annie’s Angels in hopes that someday she can put that toward a van, maybe raise more money.

Lately, Dakota’s health has taken another turn for the worse. Unrelated to the gene mutation and the epilepsy, in the past few years he has been diagnosed with dilated cardiomyopathy. “His heart has just over doubled in size in just over two years. Thankfully, his pressure is good because his body is compensating. The fact that he’s not running around is a huge benefit,” she said.

And so there are yet more doctors appointments, more trips carrying Dakota up and down the stairs, more stress, and doing it all with limited resources. The family’s income is fixed by Charlie’s work as assistant manager at Auto Spa car washes in Kittery, York and Wells and by Social Security disability payments for Dakota that allow Shannon to be available for him. Yet serenity runs deep in their spirits. The Carters’ relationship has been strengthened, not weakened, by their challenges, they both said. “We’re as close now as we’ve ever been,” she said.

So when she heard that Habitat was looking for a family for their next build, “I said to Charlie, ‘It can’t hurt,’ so we applied.” When they were called for an in-person interview last spring, they were one of more than half a dozen families being considered. “They said we should hear by the end of the month, and we didn’t hear anything, so we said, ‘Maybe it’s just not meant to be,’” Shannon said.

“It’s like the lottery,” said Charlie. “You apply for it but you never expect to get it.”

For Habitat board member JB Marchesseault, who is on the committee that chooses families, it was the in-home visit that clinched it for him. “The interior space looked good in terms of being up to date and clean, but they have two boys with no place to play outside. It just didn’t seem like a place where any kid should grow up. The bathroom was so cramped, I couldn’t imagine getting a wheelchair in it.”

Habitat is modifying the home to include a handicapped bathroom, a handicapped ramp outside, wider doorways and passageways. “This family is going to blossom in their new space,” he said.

Under Habitat’s terms, the Carters are obliged to put in hundreds of hours of sweat equity, something both are eager to do, but particularly Charlie. It is tough, he said with a catch in his voice, knowing that as a father and husband you can’t provide the way you want to for your family. This Habitat house, he said, gives him a chance to begin to even things out.

But Habitat will have need of many volunteers in the months to come, following groundbreaking in the next few weeks. Marchesseault said there are many ways to help out, from volunteering at the site, to donations of equipment or funds. Unfunded construction costs for this project are about $55,000, which includes in-kind donations of material and labor.

Shannon Carter said she is going to miss York.

“I grew up on Sentry Hill, within walking distance to the beach, the House of Pizza and the library,” she said. “It’ll be a little different. But now I’ll be able to wheel Dakota out to the back yard, and it will be so nice for Jordan to go outside and play. Just to have that alone is going to be huge.”

How to help

— For volunteer opportunities on the Wells build, go to habitatyorkcounty.org and click on the ‘volunteer’ link. Once the house build is underway, people will be directed to a calendar.

— On Dec. 8 at 7 p.m., a fundraising concert with the Downeasters barbershop quartet will be held at Wells High School.

— The wish list for this build include: driveway paving, drywall, lawn seeding and landscaping, plumbing labor and materials, flooring, kitchen cabinets and interior insulation. Those interested in helping are asked to call (207) 985-4850.

 


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