Kim Morey knows everyone in town. It’s only natural — she’s lived in Bentonville all but her first year of life.
Her friends tease that a lunch date doesn’t pass without Morey seeing a face she recognizes.
But in those short, nice-to-see-you conversations, old friends probably can’t make out what’s changed about the 46-year-old in the last year and a half.
You can’t tell. It’s not obvious. But there’s a lesion on Morey’s brain. Doctors discovered it in January 2008, a few weeks before her 45th birthday. They call it Retinal Vasculopathy with Cerebral Leukodystrophy — RVCL, for short.
Simply put, RVCL is a rare genetic disease that causes the progressive loss of tiny blood vessels in Morey’s brain and eyes, triggering “mini-strokes,” as she says.
RVCL affects only a handful of people in the entire world, but it has touched many in Morey’s family.
It’s a disease that has no treatment or cure. And for victims like Morey’s father and grandmother, it’s a disease that kills in 10 years or less.
For Morey, the battle began with a mere speck in her eye. A floater, doctors told her. Normal for a woman in her 40s, she assured herself.
But for 20 years, she had worried about the 50 percent chance of discovering she was a carrier of the RVCL gene.
So when doctors later ordered an MRI to investigate persistent sinus problems, and when that MRI showed a lesion on her brain, she knew. The lesion wasn’t a sign of multiple sclerosis, as doctors suspected. That speck in her eye wasn’t a harmless floater. Something was very wrong.
“They said the first step would be to do a spinal tap to find out if I had MS, and then send me to a neurologist, who probably would’ve gone in and taken a biopsy,” Morey says. “But I just had a feeling. I knew right away what it was. I said I wanted to go to St. Louis.”
There, at Washington University, Morey knows a doctor named John Atkinson. He’s the same doctor who treated her father 20 years earlier, through which he discovered RVCL and originally named it something different — CRV, for Cerebroretinal Vasculopathy.
Until Atkinson’s discovery, Morey’s family assumed brain tumors were hereditary in their pedigree — her grandmother died from a supposed tumor, and so did her grandmother’s mother. Each only lived a few years after diagnosis.
But because of Atkinson and his research, by the time Morey was in her 20s, she knew of the disease that killed her father. She also knew she and her younger brother, Mike Garrison, were at risk.
Now, because of RVCL, Morey experiences fatigue and blurry vision, and she could encounter more serious, stroke-like symptoms in the future. Doctors advise Morey to stay healthy and keep her stress level down. No other treatment is available.
“Sometimes, I just think, I can’t believe we’re in this situation,” she says. “It’s just the craziest thing ever. How can there be this thing that almost no one has, and it’s fatal, and there’s no treatment, and it’s being passed down? It’s almost surreal.”
Madonna Bogacki, Atkinson’s assistant, says the RVCL gene is present in 10 known families. They’re sprinkled around the country and world — Ohio, California, the Netherlands — and according to Atkinson, it’s likely that more people have the disease but have been misdiagnosed.
In their quest for a cure, Atkinson and his team discovered in 2006 the gene responsible for RVCL. So even though those diagnosed with the disease usually begin showing symptoms between the ages of 38 and 53, Kim and Kevin Morey’s three children now could choose to find out whether they’re carriers of the gene once they hit 21.
“After 20 years of studying this family, Kim’s children have the chance to be tested, and hopefully by the time they reach her age, they can discover a cure,” Bogacki says.
In the meantime, donations remain the dominant force behind Atkinson’s ability to continue research. Grant money is hard to come by because the disease affects so few people, he says.
Garrison, who hasn’t shown any symptoms of the disease but is still at risk, praises the work of Atkinson and his research team.
“There forever we thought it was just the two of us,” he says. “The hospital has been researching this since Dad died, so as far as I’m concerned, those guys are heroes up there.”
Because no formal treatment exists for Morey, she says she’s focused on raising money so Atkinson can continue looking for treatment — and a cure.
“If this research stops, then there’s no hope. I have no hope,” she says. “And then my children, 50 percent of my three children are going to have this disease, and there’s going to be no hope for them. We need to raise funds for this research to keep going.”
To continue the flow of funds, Morey’s coworkers organized a sample sale in February and raised more than $19,000, every penny of which went to Atkinson’s RVCL research. Now, a group of graduate students studying marketing at John Brown University are helping Morey organize a benefit golf tournament to be hosted in the area in July.
The students had their pick of clients, but they knew Morey’s story and thought it deserved some awareness. They agree that working with her has been an eye-opening experience.
“She’s just been unbelievably humble and grateful for the support we’ve given her,” says Tyler Gill, a member of the group. “I was kind of taken aback by her. She’s very driven to raise money and find a cure for her kids. For her to have such a great attitude and great outlook on life, and still being focused on trying to find a cure for her kids, is incredible.”
Morey says a day never passes that the disease doesn’t weigh on her mind. But she tries to stay strong, mostly for her three kids’ sake.
And her conviction isn’t simply superficial. With support from her husband, family and friends, she says she truly has confidence that Atkinson’s research will produce a cure for RVCL.
“I’m a Christian, so I feel like God does perform miracles — that he could do that, if he wants to,” Morey says. “The research is going on, we keep raising funds, and I do maintain hope that there will be a cure.”
At A Glance
Cure CRV Benefit Golf Tournament
Date: Friday, July 10
Location: Lost Springs Golf Course in Rogers
Cost: $600 a team or $1,000 a team for hole sponsorship
Includes: Game package, two mulligans per player, prizes, golf entry for one day, Cure CRV T-shirt, lunch/breakfast and beverages
Deadline for entry: Thursday, June 25
Contact: Paige Waddell at 479-845-2636 or [email protected]
Make A Donation
Send donations for RVCL research to:
c/o Pactiv Corporation — Paige Waddell
109 S.E. 22nd St.
Bentonville, AR 72712
Make checks payable to Cure CRV.
For more information, contact Waddell at 479-845-2636 or [email protected]
© The Morning News 2009