Tipp City family raising awareness of rare, deadly disease impacting 7-year-old son

TIPP CITY — A Tipp City family is learning to live with the fact that their 7-year-old son is battling a rare deadly disease.

In August last year, Emily Blackburn took her son Grayson to his eye doctor to see if he would need glasses. The diagnoses this appointment would lead to would change their family’s life.

His doctor found something concerning in the photos of his retina and sent them to a retina specialist who then suggested genetic testing.

After multiple rounds of genetic testing, the family got their results in March — Grayson had Neuronal Ceroid Lipofuscinosis, otherwise known as Batten disease.

Batten disease is a rare genetic disease that affects Grayson’s brain, motor, speech and swallowing skills, Blackburn said.

Life expectancy for children diagnosed is usually late teens to late twenties.

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“It’s just initial heartbreak. It’s just, you never envision this happening to your child, you always think that it’s somebody else’s, and not yours. It’s a lot of heartbreak that we have almost every day, but we’re just trying to stay hopeful,” she said.

Looking at Grayson, Blackburn said no one would guess he is fighting a deadly disease.

“You would never know that anything is happening in his little body. He is legally blind, so his vision is 20 over 200 ... but you would never even know it. It seems like it’s an invisible disease until it’s not, but for right now, he’s doing really great,” she said.

Blackburn set up a gofundme to help with medical costs as well as a website and blog to document Grayson’s journey.

They are also selling T-shirts.

You can find more about Grayson’s journey here.

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