Preschooler battles rare genetic syndrome - WNEM TV 5

Preschooler battles rare genetic syndrome

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Noah is a sweet four-year-old with a rare syndrome. (WOIO) Noah is a sweet four-year-old with a rare syndrome. (WOIO)
Noah loves to spend time with his sister, Emily. (WOIO) Noah loves to spend time with his sister, Emily. (WOIO)

For the parents of a preschooler suffering from WAGR syndrome, hearing his diagnosis was the low point. Now they're working with partners like the Cleveland Sight Center to help little Noah live a full life.

In many ways, Noah Gromek is a typical four-year-old who likes to play tag and antagonize his older sister. But he's living with WAGR syndrome, a rare genetic condition that affects the 11th chromosome, and can be life threatening.

Noah is legally blind, and fighting a second bout with childhood kidney cancer.

"After surgery we're looking at an additional 20 weeks of chemo so, we're working through it," said his mom, Jenn Gromek. 

"He sees about four feet around him. That's his field of vision. He can tell things are in the distance but he can't see the details," said his dad, Jason Gromek. 

To help Noah developmentally, they go to the Cleveland Sight Center's early intervention program.

"We have to bring things closer, we have to provide some experiences that allow him to engage with his environment in a way that's different from a typical child," said Sylvia Snyder, Director of Child and Young Adult Services.

His parents say it's taken a toll on all aspects of their family.

"If I could take it from him, if it could be me, I would wave that magic wand in a heartbeat to do that," said Jenn.

They're hoping for support and inspiration as they host 16 other families dealing with this syndrome for WAGR weekend.

"They all know what's going on with him. It's kind of the lift that we need. You get to see kids that have survived it," she said.

The family has set up a "Give Forward" fundraising account to help with the mounting medical bills. If you want to donate, click HERE

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