ROCKWALL, TX (September 2, 2014) UPDATE – Wednesday, September 17 is Conquer Chiari Fundraiser Night at Joe Willy’s in Rockwall. Stop in for dinner between 5 and 10 p.m. and you’ll be helping to raise money and awareness about this neurological disorder affecting a local family. See their story below.
ROCKWALL,TX (July 15, 2014) When her son Reid, and and later her daughter Regan, were diagnosed with Chiari Malformation, Nicole Watson felt discouraged. Now she strives to stay positive and help promote research and awareness by organizing a Conquer Chiari fundraising walk at Harry Myers Park in Rockwall.
Watson said she was looking for support, and found it in the form of the annual fundraiser.
“I just wanted to meet some other people who have it,” she said.
Watson has participated in the walk herself each year, but this is her first time to organize the event. She will still be walking on the day of, alongside the rest of her team decked out in “Representin’ Reid and Regan” t-shirts. Regan, 14, was just diagnosed in March.
Watson said her specific team is having a fundraiser of its own at Joe Willy’s in September before the day of the walk.
“We try to stay positive and deal with it in the best light possible,” she said. “That’s why I do what I do.”
Chiari Malformation is a neurological disorder where the brain descends out of the skull and puts pressure on the spine. The symptoms can be very diverse, including severe headaches, neck pain, fatigue in arms and legs, digestive problems, and more. About 300,000 people in the U.S. are affected by Chiari Malformation, according to a press release by Conquer Chiari.
Watson explained that because the disease is not well known, research and treatment options are extremely limited.
“When you have something no one has really heard of, there isn’t a lot of money for research,” she said.
There is currently no cure for Chiari, but symptoms can be lessened. Watson explained that Chiari patients must see a doctor who specializes in the malformation rather than a typical neurosurgeon because it is so rare, otherwise doctors who are unfamiliar with it can end up doing more damage than harm.
Her son Reid has traveled to New York City for procedures from leading Chiari specialists. Watson also said that many people are misdiagnosed with other disorders such as fibromyalgia because Chiari is so rare. These are some of the reasons that fundraising is so important.
Watson said coping with the symptoms of Chiari differs from day to day, but that she and her family try to keep an optimistic outlook no matter what.
“Some days are better than others,” Watson said. “It can be draining emotionally—when your kids are tired or struggling or want to be able to do things other kids can and don’t understand. I wouldn’t wish it on anybody, but we just try to focus on what we can do instead of what we can’t do. We try to focus on the positive.”
Community members who would like to get involved with the Conquer Chiari Walk Across America by walking in a team or sponsoring a walker can visit the Conquer Chiari website at http://www.conquerchiari.org/index.html.
By Blue Ribbon News staff writer and reporter Julie Anne White.
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