ELLSWORTH – Thirteen-year-old Grady Larson wants the world to know about his cousin Sofie Killam and is asking the community to help her family.

Sofie is 6 years old and has degenerative epilepsy. She is the daughter of Kevin and Kayla Killam.

“She used to be able to run and play, but she is losing those abilities,” Larson wrote to the Journal. “Now she is in a wheelchair and can't talk, and she eats through a feeding tube. Her family has many medical expenses and debt for procedures that insurance did not cover. They also have need of a handicap-accessible van, handicap-accessible bedroom, and nighttime nurses.”

Larson and his family will host a benefit and silent auction for Sofie from 1-4 p.m. Saturday, March 28 at Ellsworth Elementary School called “Sundaes for Sofie.” They are also hosting a GoFundMe online fundraiser for the family (https://gofund.me/048fde5c4) The money will be used for medical bills, a handicapped accessible van, a main-level bedroom, nursing care, treatment and family travel expenses related to Sofie’s care.

“If you've met Sofie, you can picture her signature blend of sweetness and spunk. This pluck has served her well as she's pushed back against the challenges of epilepsy since babyhood,” the GoFundMe states.

According to a family update published on the site, the past six months have brought increased challenges for Sofie and her family.

“Doctors have redefined her epilepsy diagnosis as treatment-resistant and degenerative, and her recent health declines in mobility, language, bodily function control, social awareness, and cognition have been heartbreaking and significant. Sofie has multiple severe seizures each day and night accompanied by decreased oxygen, worrisome pauses in her heart rate, and emotional distress,” the site reads.

A post from Sofie’s aunt Darla on her Caringbridge site said Sofie will turn 7 in March. She experienced her first seizures in infancy in 2019 and her condition has deteriorated over the years to the point of being “drug resistant.”

“This means that her family has tried numerous treatments (med changes every few months, VNS implant, ketogenic diet, etc). She's at the point of not being able to walk on her own, saying just a couple of words per day (if we're lucky), not being able to smile or make much for facial expression, and the latest- receiving a g-tube because she cannot drink or eat enough to support herself (a few sips if she's lucky),” Darla wrote. “One thing she can still do is cry, and it's heartbreaking.

Sofie has been in the hospital more than at home the last few months, and the doctors don't have much more to offer besides in depth genetic testing to see if something deeper lies beyond the epilepsy (and more med changes). A neurologist recently told Kevin and Kayla that Sofie could have 6 months, or 30 years, depending on how she reacts to the medicines offered (the medicine that has been most recently highly recommended will eventually wreck her heart valves, but insurance isn't authorizing it atm (at the moment).

“The biggest concern right now (or, one of them), is the fact that her seizures happen multiple times per day and night (a good night's sleep is 'just a dream' for Kevin 'n Kayla). When her body relaxes, her brain fires into seizure mode. When she gets startled, her body fires into seizure mode (despite the meds). Sometimes she has a seizure out of the blue, with no explanation beyond something happening inside her precious lil brain.

“Her nighttime seizures seem to be extra severe, and her heart stalls out for a few moments before kicking back in. She's got oxygen by her side now, so the second she goes into a seizure, the caregiver puts an oxygen mask over her mouth.

“We have no idea what the future will hold for Sofie, and even though it's hard, that lil girl of the past had spunk, sass, humor (she was hilarious). She used to lead her lil pony around like nobody's business! You can still see that spark every now and then, and we'll be rooting for her every moment! We'll also be rooting for Kevin, Kayla, Meadow, Aiden, and Atlas,” Darla wrote.

To donate to help with Sofie’s medical expenses, go to https://gofund.me/048fde5c4 To follow Sofie’s journey, visit https://www.caringbridge.org/site/34a226fe-eff7-11f0-8fa1-4558f974a14c