KANSAS CITY, Mo. -- Parents of children with rare diseases say trying to find proper treatment for them can sometimes feel lonely and impossible, which is why some of these parents got together to form a support and advocacy group called RareKC.
This week- they're meeting to swap stories and solutions.
“We were told she wouldn`t talk, she wouldn`t walk, she wouldn`t be able to hear or see,” Koann Brass said.
Brass recalls the day she found out her now- nearly 5-year-old daughter, Kohanna, had a rare genetic disorder. It's called C.H.A.R.G.E., and the disorder can cause breathing and learning trouble as well as hearing and vision impairment.
“When we were given the diagnosis, we were given the worst of the worst outcome,” Brass said.
While she says Kohanna's case isn't the worst of the worst, she relies on a cochlear implant for hearing and has several other physical impairments. For Koann- this whole experience was a bit mystifying, until she found RareKC.
"You have to know that you have a support system there,” Brass said.
RareKC is that support system, a group of people who have rare diseases or who are related to someone with a rare disorder- they offer support and an avenue to become advocates for rare diseases.
“Who`s going to make the impossible happen but us as parents, because you don`t have a choice, this is our life,” said founder, Kelly Ranallo. “We did not choose it- it chose us.”
Kelly Ranallo is also a parent who's experienced the toll of rare disease. She's the founder of RareKC.
“Eighty- percent of your journey when you have a child with a rare disease or you yourself have a rare disease is the same, and twenty-percent of it is probably specific to your disease,” Ranallo said.
RareKC has goals of one day helping to build a center for treatment here in Kansas City and to raise money for research for rare diseases. For now, they want to reach out to others who have a rare disease or are caring for a loved one with a rare disease.
RareKC is holding its Leadership Summit:
Thursday, March 2 from 8 a.m. until noon
Kauffman Foundation Conference Center.
4801 Rockhill Rd.