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Butte Falls reaches out to 7-year-old with rare disorder Blair and Courtney Anderson walk with their son Carter, 7, who suffers from a rare brain disorder known as PKAN. Mail Tribune / Denise Baratta Friday Oct 21, 2016 at 6:19 PM Oct 22, 2016 at 9:49 AM Buffy Pollock for the Mail Tribune Seven-year-old Carter Anderson, sporting a fedora-style hat and a prominent dimple, was all smiles trying out his shiny new wheelchair on a chilly Friday morning. Dad Blair Anderson sent Carter spinning in tiny circles across Don Jones Park in Central Point while he smiled and laughed. Save for stealing kisses from his mom, Courtney Anderson, Carter's focus was being outside in his new wheels, painted bright yellow in honor of his favorite character, SpongeBob SquarePants. Carter was diagnosed a year-and-a-half ago with pantothenate kinase-associated neurodegeneration, a rare disorder of the nervous system characterized by an abnormal buildup of iron in parts of the brain. It typically develops during childhood and manifests through progressive difficulty with movement and speech.  Born on his parents' fourth wedding anniversary, May 21, 2009, Carter was a healthy baby by all counts. "We noticed some developmental delays early on and at first he was diagnosed with a mild form of cerebral palsy," said the dad. "Everything was fine until he started to crawl and we noticed he was falling behind. By the time he started kindergarten, he had been through a special needs preschool in White City and he could count to 50 and had learned his ABCs." While the family remained guardedly optimistic, Carter's condition seemed to begin deteriorating last year. The iron buildup in parts of his brain, caused by a missing enzyme, is creating a "disconnect" between brain and neuromuscular system. Carter's tiny muscles are constantly "at work" and in a flexed state, explained Courtney. Though life expectancy for PKAN sufferers is only into their teens or 20s, the Andersons are hopeful that research will help their son beat the odds. A bright spot in their struggle is Dr. Susan Hayflick, a geneticist at Oregon Health & Science University and part of an international consortium of scientists studying brain disorders such as PKAN. "We had his diagnosis and we were getting ready to go home the next day and she came to our door," Courtney said. "She told us, 'I bet you'll be as happy to meet me as I am to meet you.'" Already, Carter's blood has helped to identify previously undetected biomarkers for PKAN. "So his blood is being used in the cure now, which is pretty amazing," said Blair, who works for the Forest Service in Prospect and who has been part of the fire department in Butte Falls, where the family lives, for three decades. "We really believe they'll be able to find some new breakthroughs so he's literally leading in the help to find the cure," he said. Trish Callahan, owner of The Old Steam Engine Barbecue in Butte Falls, said Carter's family's positive attitude and the community's love for Carter are inspiring. "The chances of having this disorder is one in a million, but the other thing that's one in a million is his smile," Callahan said. "Before his communication loss, he told his parents that he didn't like the shots but that if it helps another kid, then it was OK. I don't even know what to say if that doesn't make anyone love this kid even more." The community is holding a street dance and barbecue event from 10 a.m. to 5 p.m. Saturday, Oct. 22, at The Old Steam Engine Barbecue, 443 Broad St, Butte Falls. Hot dogs, pulled pork sandwiches and Philly cheese steak sandwiches will be available for between $3 and $10, with the proceeds going to the Andersons. The event will include a street dance with two bands and other activities. Plans are also underway for Carter to be the school Sparrow for Butte Falls and Prospect elementary schools this year. An alumni football game, between alumni from Prospect and Butte Falls, is slated for 1 p.m. Nov. 12 at Butte Falls Charter School to raise additional funds. Updates are posted on Facebook and the family's Go Fund Me website. The family's wish list includes funds to help make the numerous trips and a bigger vehicle to accommodate the family and needed equipment to transport Carter. On the web: https://www.gofundme.com/carteranderson?ssid=778451563&pos=1 https://www.facebook.com/footballforcarter/?fref=ts. Reach Medford freelance writer Buffy Pollock at [email protected].