Ohio family on mission to get daughter treatment at Boise St. Luke's

Posted at 9:15 PM, Jun 08, 2017
and last updated 2017-06-09 00:29:43-04

An Ohio family is coming to Idaho to get their daughter the specialized treatment she needs.

Addison Karcher, 7, has Glycogen Storage Disease Type 0. GSD is a rare genetic metabolic disorder that affects her ability to regulate blood sugar. 

The family wasn't planning a trip to Idaho until they found out Dr. Laurie Tsilianidis was at St. Luke's in Boise. 

"Although we have some amazing doctors in our area, they really don't know a lot about Glycogen Storage Disease because of how rare it is," Addison's mom Katie Haney-McGowan said.

Dr. Tsilianidis is a pediatric endocrinologist. She specializes in the treatment of GSD.

"Parents of children who have low blood sugar are often willing to go great lengths to get their children the treatment that they need," Tsilianidis said. 

The family is willing to pay out-of-pocket for the travel expenses and treatment.

Because the disease is so rare, there are very few doctors in the country with the specialty to help Addison. 

"I don't actually know any [other] specialists specifically for this disorder in the West," Tsilianidis said.

The family knows Addison's treatment will be costly, but they say it's priceless to see someone who can help their daughter.

"She's one of the only specialists in the United States, and people just rave about her in the [GSD] community," Haney-McGowan said. "We feel very blessed that we get to see her."

The family does have a GoFundMe account to help with expenses.