For The Love Of Cole

NICOLE ROGERS and Shane Kidd lovingly care for their 2-year-old son Cole, who was diagnosed in May with a rare genetic brain disease that has taken away his motor skills. Local artist Mark Cline and his wife Sherry are leading a community effort to raise money to help with the family’s medical and other bills. (Katie Doar photo)

NICOLE ROGERS and Shane Kidd lovingly care for their 2-year-old son Cole, who was diagnosed in May with a rare genetic brain disease that has taken away his motor skills. Local artist Mark Cline and his wife Sherry are leading a community effort to raise money to help with the family’s medical and other bills. (Katie Doar photo)

Parade Helping To Raise Funds For Family

Glasgow resident Nicole Rogers cares for her sick 2-year-old son by day, and then sits up at the computer for much of the night, gathering information.

“I come in every night and she’s got a notebook, and it’s just full,” Nicole’s husband, Shane Kidd, said. “She writes memos and stuff, what to eat, what builds the brain, what doesn’t.”

In May of this year, their son Cole was diagnosed with a rare genetic brain disease called “late infantile Leukodystrophy.” As the disease has progressed, it has taken away his motor skills; Cole can’t sit up on his own, speak, or move his arms and legs. Since the diagnosis, Rogers and Kidd have undergone the unpleasant experience of driving hours to meet with doctors that shrug their shoulders and admit that they have no idea what to do.

“Most doctors have never heard of the disease,” Lisa Rogers, Nicole’s mother, said. “And [Nicole’s] got to educate the doctors and the nurses about how to take care of him, and what he needs.”

When local artist and entertainer Mark Cline learned of Cole’s illness, he and his wife, Sherry Cline, decided to combine a fundraiser for the family with efforts to revamp the Goshen Christmas parade.

For every float entered in the Dec. 14 parade, $100 will be donated to Cole’s nonprofit charity, which is managed by Sherry and Mark Cline. The Clines will distribute the donated money to help pay for Cole’s family’s medical expenses, rent and utilities. Donations separate from the parade can be made online at www.fortheloveofcole.com, or in person at the Bank of Botetourt.

Mark Cline told The News-Gazette that around 40 floats have already been entered, and that, as word has gotten around, more donations have been coming in.

Goshen’s Christmas parade used to be a major event. But recently the parade has been largely dominated by fire and rescue vehicles. Only about 15 individual families showed up to watch last year, according to Cline.

“It was more like a fireman’s meeting,” Cline said. “So we thought maybe we can create a miracle in Goshen and a little magic in Glasgow at the same time. This is Christmas, so it’s all about the healing.”

Anyone who wants to enter the parade should contact Mark Cline or the town of Goshen; the sponsorship for Cole’s charity is only active for actual floats, though, rather than for groups of walkers. Mark Cline is encouraging those who are entering floats in other local parades to bring them to Goshen. The parade starts at 4 p.m. on Dec.

14.

Nicole Rogers and Shane Kidd described their family as private, so, at first, they were skeptical about the idea. But eventually they decided to use the event to raise awareness as well as funds.

“We want somebody else not to have to go through this,” Kidd said.

According to Rogers, Leukodystrophy can be prevented if its potential victims are aware that they are susceptible before the symptoms set in. There are tests that can identify the disease, but since most doctors don’t know about it, much less average parents, there’s not much of an opportunity for people to take the necessary tests before the disease becomes serious and deadly. To make matters worse, Cole’s early symptoms seemed harmless. He often walked on tip-toe, Kidd said, and was uncomfortable in a car-seat, but plenty of kids act this way, so those behaviors didn’t seem like cause for concern.

The family first noticed that Cole might need medical attention on his second birthday.

“We came up to do a little party, and we had presents here, and when he walked over to get his presents I told Nicole, ‘Something’s going on with his knees,’” Lisa Rogers said. “They looked like they were starting to go inward, so we thought he was bow-legged.”

Rogers took Cole to a pediatrician, who suggested that Cole get fitted for leg braces at the University of Virginia Medical Center.

“It felt like we hadn’t even parked the car and they had him in the emergency room,” Kidd said. “We went in for braces and they looked at him and said, ‘It’s worse than that’.”

After hours at the hospital, Kidd returned home for a work commitment. He traveled back with Lisa Rogers while Nicole Rogers waited.

“Then seven doctors come in with their chairs and sat around her and told her what the disease was, by herself, while she was holding the baby,” Lisa Rogers said. “And the last doctor is the one that informed her that it was fatal. They told her that by herself.”

Soon after Cole was diagnosed, he went into seizures that lasted for as long as six hours. Nicole Rogers then took him to the Carilion Stonewall Jackson Hospital, where they put him on life support, and then transferred him to a hospital in Washington, D.C.

Kidd and Rogers both complained that the D.C. hospital kept Cole in a crowded room; they said that the nurses were impersonal, and it seemed as if no one knew Cole’s name. The doctors also didn’t know much about the disease, and they didn’t communicate effectively with the family. Kidd and Rogers thought that they were resorting to drugs to keep Cole sedated, so that he wouldn’t be in pain.

“They said, pretty much, ‘He’s gonna suffer, all the way through,’” Rogers said.

The family eventually got Cole out of that hospital and transferred his care to Carilion in Roanoke, which they said is a much better and kinder institution, even if those doctors don’t know much about the disease, either.

Many appointments later, they finally found a doctor in Pittsburgh who has been studying Leukodystrophy for 20 years. They made an appointment for early December, but had to cancel, since the insurance money hadn’t come through. They are hopeful that Cole will get to see the doctor later in the month.

Recently, Kidd got to take Cole to the river near their house, which was Cole’s favorite place to go before he got sick. He would go fishing there with his three older brothers, and play in the water.

“[Shane] was able to take him down in the stroller this past week and when they left the river, Cole wanted to go down and get in the water,” Lisa Rogers said.

Kidd marveled at how quickly Cole’s severe symptoms had came on, saying that one day, he was able to run and play, and the next day he couldn’t move.

“Whenever [me and my older sons] were in the woods, he used to stand at the door and go ‘Dad, Dad, Dad, Dad,’ but now, we don’t get words.”

Throughout, Shane Kidd and Lisa Rogers have been grateful for their helpful friends, and for the tenacity of mother Nicole Rogers, who has been relentlessly making road trips across Virginia and the Southeast, searching for information, and pursuing experts that could cure her son.

“She was the stubbornest little kid,” Lisa Rogers said. “When I told her that, she’d say, ‘I’m not stubborn, I’m determined.’”

“We’ve been married 22 years,” Kidd added. “And it’s been a long ride, and this is definitely a test of our will. But she’s tough; she’s the matriarch, or whatever you call ‘em.”

The News-Gazette

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