The Peninsula held its first “Bcureful” Tuberous Sclerosis Complex (TSC) awareness event Sunday August 10th, thanks to 2014 reigning Mrs. Alaska and Footworks Quality Shoes & Boots on K-Beach Rd. TSC is a genetic disorder that can affect multiple organ systems, “My son currently has seven brain tumors, two in his left eye and two in his heart and as he gets older they are likely to grow elsewhere in his body,” explained Mrs. Alaska Erica Chilla of Kenai. “World Peace is great but my platform for the Mrs. Alaska and Mrs. America pageant was raising awareness of Tuberous Sclerosis Complex. I needed a way to get people to hear me about TSC and my family thought that competing for Mrs. Alaska would give me that opportunity and the megaphone I was looking for. It did thanks to folks like Tina at Footworks,” she said. Erica is the granddaughter of Ozzie Osborn of Kenai and the daughter of Joyce and Seth Rawson, the wife of Shawn Chilla and the mother of 4-year-old Easton and almost 2-year-old Ace who is fighting TSC. His brother Easton is fine and already riding in the Soldotna Rodeo.
Over $1,000 was raised Sunday at Footworks where a kids carnival fun fair was set up with a petting zoo, games, a Jumpin’ Junction slide, horse rides and of course the opportunity to meet Mrs. Alaska and her son Ace. “I got the idea when Erica came into the store and was talking to me about the pageant and her son with TSC. We thought it would be a great idea for the community to raise some awareness about this disease and I’d guess we had about five hundred folks turn out today,” said Tina Lohry, Footworks owner.
“Bcureful” is the non-profit organization that is receiving the funds raised by the efforts of Mrs. Alaska, “They work directly with the researchers there is no middleman, no in-between administrators they ask the researchers directly what they need and they directly fund that research for the year. About two babies every day are born with TSC that’s say one in six thousand, it’s more common than ALS in the United States but in Alaska I haven’t come across many other people with the disease maybe three others besides my son Ace. We are in the process of coming up with a support group for Alaskans and we are struggling to locate others in Alaska with the disease so we can get together and face the TSC challenge together. I’ve learned since I have become Mrs. Alaska how much every dollar can help when funding research” said Chilla. While there is no cure according to Erica some afflicted with TSC have lived to be 95 and others don’t live to see their second birthday. “It depends on the care they receive and where the tumors decide to grow,” she said. Find out more at Bcureful.org.
