NORTHERN KENTUCKY (WXIX) – A Tri-State family is hosting an upcoming fundraiser to help raise awareness for a rare genetic condition their son has.
Van Foster is 11 months old and one of just 50 children in the world with KARS mutation.
Van’s mother, Kristen Holmes, said his diagnosis has been earth-shattering, but they are determined to help with research however they can, so hopefully other families won’t face the unknowns that they have.
“We’re trying to give other families in the future with this hope, rather than being told there’s no direction, and uncharted territory and no treatment,” Holmes said.
Last September, after a normal pregnancy, Holmes and Taylor Foster welcomed their baby, Van.
He seemed to be a healthy and happy baby, until his two month check up.
Doctors noticed Van had vision problems and began to dive deeper into what could be the cause.
Van was first diagnosed with Cerebral Palsy, before genetic testing showed he has a KARS 1 mutation, which is a genetic disorder.
“Van is one of 50 known cases in the world,” his dad, Taylor Foster, said.
Holmes said the rare condition comes with tough questions that modern medicine can’t answer.
“No doctor can tell us how long we’ll be able to keep him with – How long we’ll be able to enjoy our time with Van,” Holmes explained. “They don’t really know. They tell us that Van will tell us over time.”
Van’s parents said even with multiple physical therapy and doctor’s appointments each week, he is delayed in meeting most age milestones.
“All the little milestones that he’s done for us are so much bigger because we know all the work he’s done to get there,” Holmes said.
Foster said that the KARS mutation causes early-onset progressive leukodystrophy, which he describes as dementia for children.
“He’ll progress… he’ll progress and then at some point he’ll start to degrees as some of that white matter takes over his brain a little bit more,” Foster explained.
Holmes said KARS is uncharted territory for their team at Cincinnati Children’s.
She’s learned most of her information through Cure KARS, an organization where parents of children with KARS can support one another, share information and push for research.
“No doctor has told me my son will probably never talk or walk without assistance,” Holmes said. “Through Cure KARS and their experiences, we know what we have to anticipate.”
As Holmes and Foster spend each day advocating for Van, they are also working to raise money for Cure KARS’ research gene therapy study, which is set to start in 2029.
“We didn’t want to just roll over,” Holmes said. “We spent a lot of days sad and upset and angry, but we knew we wanted to do something.”
That something is a volleyball tournament.
Van’s parents said the event will help raise money for the Cure KARS foundation.
The tournament is Sept. 20.
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