CHARLES TOWN—With three active sons, a husband, a challenging job and multiple volunteer gigs, Kim Watson is a woman on the go.
And yet, she has given every ounce she can to helping her niece, who is slowly dying from a rare, incurable disease.
Liberty “Libby” Ray Vieson, 8, lives in Ohio with Watson’s sister, Stephanie. Since her first year, Libby has experienced a number of physical difficulties. Two years ago, a doctor diagnosed her with ataxia-telangiectasia, an inherited progressive, degenerative disease that affects a variety of body systems.
“She was misdiagnosed from age one because the disease presents so many ways,” Watson said. “We were relieved to know what it was, but very sad because we also understood the prognosis.”
Epidemiologists estimate the frequency of A-T at 1 in 40,000 births. But it is believed that many children with A-T, particularly those who die at a young age, are never properly diagnosed. Therefore, this disease may actually be much more common.
The condition is characterized by the degeneration of the cerebellum, gradually leading to a general lack of muscle control. Soon after, tiny red spider veins can appear in the corners of the eyes or on the surface of the ears and cheeks when exposed to sunlight. About 70 percent of children with A-T suffer from recurrent respiratory infections, which in many cases, can become life-threatening.
Children with A-T tend to suffer also from lymphoma and leukemia.
Because A-T is a rare, “orphan” disease, very little research data is available on pharmaceutical therapies. The first signs of the disease usually appear during the second year of life.
A-T patients usually die from respiratory failure or cancer by their teens or early twenties. A few A-T patients live into their forties, but they are extremely rare.
Watson said Libby has already experienced a myriad of problems.
“A-T is a slow process where things gradually erode. Libby’s immune system is almost nothing so she’s sick a lot,” Watson said.
Colds last longer and are more serious. Meanwhile, Libby is slowly losing her ability to walk and now has a motorized wheelchair.
“Her eyesight is fading,” Watson said. “She started having seizures, and when it was determined it was likely from a brain tumor, they decided to remove it. That was further complicated by Libby being too underweight for the surgery, and in order for her to gain weight, they had to install a permanent feeding tube in her belly.”
Watson said she comes from a large and supportive family. Most of them live in Ohio and show up whenever and however they are needed to help with Libby’s care.
Despite her own schedule, Watson also makes time to be there for her niece during critical moments. She flew to Ohio for Libby’s brain surgery last October. She will be at Disneyworld on March 29 when the Make-A-Wish Foundation grants Libby’s wish to be a princess at a royal ball and dance with a prince.
She also has done A-T fundraising events to aid research efforts.
“I try to make people aware of the disease, and of rare diseases in general, as there is so much less publicity about them,” she said. “Because there is no cure for A-T, not even anything to slow it down, if there’s anything I can do, any fundraising effort I can participate in to foster research, or help them figure it out, or extend her life for a month, I’d do it.”
In January, Watson ran a half-marathon at Disneyworld. She had never run more than four consecutive miles, so doing 13.1 took fortitude. “My first goal was to finish; my second, to finish running; and my third, to win the Donald Duck Medal for Libby, which you get for completing the race,” Watson said. “I did all three.”
Libby and her mother joined Watson for the event, and Libby participated in the 5K race the day before, with her mom pushing her in the wheelchair.
“I thought about Libby a lot while I was training for the event and then running it — about how I was being selfish about my own pain,” she said. “The running was hard, I didn’t think I could do it, but then I’d think about her pain, and it would spur me on and I’d keep running. Any insignificant amount of pain I felt was nothing compared to what she’s endured, and what she still endures.”
Watson and her mother are currently planning an A-T golf fundraiser in Maryland for September. “We are trying to get Joe Kindregan, the songwriter of “Hard Life,” which was written about A-T, to attend. We are hoping to raise at least $10,000 with this event,” said Watson.
Kindregan is a 23-year-old from Springfield, Va., with A-T. He wrote the song and his friend, country music star Brad Paisley, recorded it. The release of the song marks a special initiative on behalf of the nonprofit A-T Children’s Project, the yearlong beneficiary of Paisley’s artist royalties from U.S. sales. The song can be purchased at all digital music outlets.
To make a donation or find out more information about the cause, visit www.atcp.org.
— Katherine Cobb is a contributing writer to the Spirit of Jefferson. She lives in Charles Town.