‘This can be changed’: Verona family carries on daughter’s fight to end vision diseases

‘This can be changed’: Verona family carries on daughter’s fight to end vision diseases

When you talk about Kenzi Valentyn, no last name is really needed.

“It’s like Cher or Madonna,” said Nancy Valentyn, Kenzi’s mom. “Everyone knew her.”

A Badger fan through and through, there’s maybe only one thing more notable than her fandom — her smile.

Her parents say she was always full of laughs, even when life gave her a lot of reasons not to, like in dealing her a lifelong battle with Retinitis Pigmentosa, a disease that slowly stole her vision.

2 yrs ago, Nancy Valentyn lost her daughter Kenzi to an illness she battled nearly all her life. It caused her to slowly lose her vision & now Nancy keeps her daughter’s glasses to remind her to keep fighting for a cure.❤️#News3Now #CycleforSight @uwhealth https://t.co/u8XljUgY4k pic.twitter.com/Sls72H8CpK

— Amy Reid (@amyreidreports) February 28, 2019

“It was a helpless feeling a lot of times, watching her go through that sort of slow, terrible progression,” said Tim Valentyn, Kenzi’s dad. “Yet causes like Dr. Gamm gives us one way to feel like you’re fighting back.”

At the McPherson Eye Research Institute, Dr. David Gamm is finding the cure.

“We’re looking at ways in which we can stop that process from happening in children and young adults who have Retinitis Pigmentosa, as well as how to replace the cells that are lost in the course of the disease,” Gamm said.

Though his team gets closer every day, their final vision for a fix isn’t quite clear, which makes the funding to keep it going vital.

They accomplish this every year with Cycle for Sight, an indoor cycling fundraiser that Kenzi made sure her team would win.

“It was something she felt a part of too,” Nancy Valentyn said. “She felt like she was helping the cause, and she a couple times said, ‘It probably won’t help me.’ She said they probably won’t find the cure in my time, but she said hopefully it will help somebody.”

Two years ago, Kenzi Valentyn died from complications from her disease, but her parents make sure never to lose sight.

“I keep her glasses on her desk as a reminder of the fight we need to keep up to find a cure for the vision diseases,” Nancy Valentyn said.

Every year the Valentyns return to Cycle for Sight, and every year they are a top fundraiser.

In thanks, University of Wisconsin-Madison is giving Kenzi Valentyn the recognition she deserves by naming two research grants in her honor, from now until funding no longer supports it.

Her parents said she would be excited – not so much to have her name on them, but to be making a difference.

“This can be changed,” Nancy Valentyn said. “Not everybody has to live their life like this if we can find a cure.”

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