It’s not a very long walk — only a mile — that’s being held to raise research funds for Arnold chiari, a neurological disorder that effects more than 300,000 in the country. It’s not long because many individuals with the disorder simply don’t have it in them to do much more activity than that.
“It’s hard because people look at you on the outside and they think you look good. But ... it affects your breathing and your heart rate. I get out of breath before I even leave the house, just getting ready,” said Agnes Starr, co-organizer of the Conquer Chiari Walk Across America, and sufferer from the malformation.
Chiari, as it’s commonly called, is a disorder that causes any variety of symptoms: pain, headaches, burning or icy sensations in the skin, dizziness and even paralysis. It’s a genetic disease but often doesn’t express itself until an individual undergoes some trauma, like a car accident or a sports-related concussion like North Tonawanda junior Matthew Zahn.
Matthew was a active, healthy 10-year-old when he suffered a concussion playing soccer. A few months later, he had another concussion after a fall while ice skating. Mom and dad — Cindy and Dieter — as well as doctors were a little concerned and so an MRI was done.
Matthew had the tell-tale sign of chiari, a protrusion of the brain through the base of the skull. The pressure that puts on the brain is what causes the pain and other symptoms.
“He started with more severe headaches. It was extreme pain but it was hit or miss. We kept a calendar and he knew his numbers, zero to ten, as far as pain, how many times he had it and then he would come home from school, he’d let me know if he had one and how bad the pain was,” Cindy remembered.
Research into the disorder is still in its beginning, and right now the only treatment available is brain surgery to relieve the pressure, explained Dieter. It’s not a cure and doctors can’t even guarantee success. Some individuals endure even more pain after surgery.
Matthew has had two surgeries, the evidence of which is clear when he turns around. A scar forms a straight line down the back of his neck with what looks like a tilde shaved into his head directly above. The 16-year-old thinks they’re a little cool and doesn’t attempt to cover them up by growing out his hair.
“He just thinks it’s the coolest thing. Some people will come up to him and be like man what happened and he’s like, ‘Oh I was in a bear fight.’ He likes making up all these little things,” Cindy laughed.
Matthew’s first surgery was in 2006 and was successful for a while until the headaches returned two and a half years later. In 2009, a second MRI revealed a syrinx — a cyst or cavity — had formed in his spine, resulting in his second surgery.
Matthew still suffers from some pain here and there, but Cindy said he’s mostly learned to live with it and it’s unclear if it’s chiari-related. His only restriction is that he has to stay away from contact sports like hockey and football, but he’s a long-time fan of soccer and made the NTHS varsity team for the upcoming season.
But Cindy hasn’t given up on finding out more about the disorder. A year ago she read an article in the Tonawanda News about the first-ever Conquer Chiari Walk Across America walk held at Ellicott Creek Park in the town. With only a week’s notice, she and Matthew scrounged up $700 in donations and took part in the event. Now she’s co-organizing the event with Starr, the woman who brought the event to Western New York.
“It was nice for Matt because he only knew maybe one or two people with chiari and with the scars on his neck he said, ‘Oh wow, I’m going to see other people with these scars,’ ” Cindy said.
Last year’s walk raised more than $20,000 and Cindy and Agnes hope to draw even more participants and attention this year. Already they’ve collected 80 baskets and 60 gift certificates to raffle off and 156 walkers have registered.
The walk, which will be held 1 p.m. Saturday at Ellicott Creek Park, will include the one-mile walk, games, carnival food, the Buffalo Jills, a 50/50, balloon animals and face paintings. Special guests Dora the Explorer, Spongebob Squarepants and Spiderman will be on hand along with music from the DIVA Show Band, which features Matthew’s sister Nicole, and Hair Nation. Walk registeration begins at 11:30 a.m. and the even should run through about 4 p.m. All proceeds from the event will be used to fund chiari research.
Contact features editor Danielle Haynes at 693-1000, ext. 116
Features
Related Photos
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From left, Dieter Zahn, Matthew Zahn, Agnes Starr, Hayley Starr (3) and Cindy Zahn stand before some of the more than 80 gift baskets that have been donated to the Conquer Chiari Walk Across America event. Both Matthew and Agnes suffer from the neurological disorder that causes intense pain and headaches.
Fundraising event for little-known chiari disorder to be held Saturday
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