The fifth annual UBA5 walk raises funds and awareness

TOPEKA, Kan. (WIBW) - UBA5 is an ultra-rare disease and a life-threatening progressive neurological condition. The walk was held Saturday morning at the Topeka Zoo.

Kim Krauter’s daughter, Mady, has UBA5 and she said they knew something was wrong, but no one could give them answers.

“It was heart breaking and for a while I was at loss and then I got a phone call from our neurologist that said, ‘Hey we’ve got another UBA5 kid and they only live an hour away from you,’ which is crazy because everybody else lives like way across the county,” said Krauter. “So, in that moment when I heard that there was somebody else who felt exactly the way I felt in the moment that they got diagnosed, that lifted a ton of pressure.”

The walk was held to raise funds and awareness to continue to find a cure.

UBA5 looks different for every kid.

Amber Smith lost her child to the disease and she said that some of the symptoms include irretractable seizures and dystonia.

“The worst part is that a lot of them will get a trach due to the brain deterioration and not being able to breath and swallow and things like that. The worst off would be the brain deterioration,” said Smith. We just don’t know when it happens. It happens in a lot of our kids differently and so I would say that’s the hardest part of it. We never know which kid is going to have it and when it’s going to start.”

The mothers said they do not celebrate milestones, they celebrate inch-stones and make sure to appreciate every moment.

“We have to do something. If nobody else is doing something, then why can’t we do something,” said Smith.

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