Connor Sawtelle needs another brain surgery to address ongoing problems resulting from chiari malformation, a neurological condition of the brain and spine discovered shortly after his second birthday.

Connor’s mother, Erika, said until the hardware implanted during one of his two previous brain surgeries properly fuses to the bones in his neck, her 3-year-old son will have to continue wearing a neck brace. Another 10-hour surgery isn’t an option.

“We’re just trying to keep him comfortable,” Sawtelle said by phone Thursday morning. “He’s in chronic pain and has nerve damage.”

Sawtelle, who used to work in real estate and now sells women’s apparel, is hosting a fundraiser Saturday in Manchester, with all proceeds going to the C&S Patient Education Foundation, better known as Conquer Chiari.

The fundraiser is scheduled for noon to 3 p.m. at Hope Baptist Church, 726 Western Ave., in Manchester. Consultants from vendors including Thirty-One, the Pampered Chef, Tupperware and Mary Kay have agreed to donate all of their earnings from the event to the chiari organization.

“We don’t really have a goal in mind, but we definitely want to raise as much money as possible,” Sawtelle said. “The foundation uses donations for research and to help raise awareness and to educate the medical profession about this rare condition.”

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Chiari is a genetic disorder in which the cerebellum, the bottom part of the brain, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and the spine. Symptoms in children include choking, trouble swallowing, chronic cough, poor weight gain and pain.

Sawtelle, who lives in Vassalboro with husband KC, Connor and his two sisters, Natalee and Charlee, said there’s no cure for her son’s condition. Surgery helps prevent symptoms but doesn’t fix the condition, she said.

Fluid goes into Connor’s lungs, so he’s been on a feeding tube for close to a year, and the Make-A-Wish Foundation is helping to provide a service dog for him that can detect signs of sleep apnea, which can lead to death in people with chiari.

Despite everything he’s been through since he was born Jan. 4, 2013, Connor’s mother said he’s an “incredible little guy and we’re blessed that he’s as happy as he is.”

The Conquer Chiari organization’s annual Walk Across America is scheduled for Sunday, Sept. 17, and this year marks the first charity walk in central Maine. The event, which will include fun and games, will begin at 10 a.m. at the Quarry Road Recreation Area in Waterville.

Jason Pafundi — 621-5663

jpafundi@centralmaine.com

Twitter: @jasonpafundiKJ


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