(STORY IMAGE:KHQ.COM)
COEUR D'ALENE, Idaho -11-year old Summer Sembar lives life without any qualms, without any worry.
Her mom, Heather Fleek, says everyday is Halloween for the vibrant fifth-grader.
“She loves to dress up in costumes,” Fleek said.
But it was this time last year when Summer’s seizures started to appear.
“We had no idea what was going on because they aren't typical, they are a-typical so with her grand mals she stays conscious,” Fleek said.
That’s because Summer has Ring-20 Chromosome Syndrome.
A disorder different from Epilepsy.
Fleek says the disorder also causes Summer’s cognitive functions, like walking and talking, to deteriorate over time.
“Last year at this time I thought she was dying,” Fleek said, “we were at Seattle Children's Hospital they put her in a coma to try to stop the seizures and she kept seizing.”
The disorder is extremely rare.
“I think she was either the 5th or 6th one in the United States that has it and there's 70 something worldwide that have had it,” she said.
Fleek says her seizures only last a few minutes, but normally happen a few times every hour.
Now Summer’s family is hoping they can get a service dog to comfort her during her seizures.
At the end of the month, two of Heather’s friends are having a fundraiser to help pay for one.
“I notice when she's around dogs and she's having her grand mals they are not as bad, she doesn't convulse as hard, she doesn't scream as loud, she is comforted by them,” Fleek said.
The fundraiser will be held October 26th, 2017, from 4:30p.m. – 6:30p.m. at the Bestland Senior Living Center in Coeur d’Alene.
For more information, please call 208-665-1600.