OLATHE, Kan. — Every parent looks forward to milestones — their child sitting up, crawling and walking.

But one little Olathe boy has no way to do those things. He can no longer swallow or breath on his own. Jadon Burks has Spinal Muscular Atrophy or SMA. He was born without a gene that gives children their ability to make muscle. Most children with this severe form of SMA don’t live beyond age two.

Jadon is three-and-a-half.

His parents, Tony and Kristin Burks, have started Jadon’s Hope Foundation to raise awareness and funds for other families affected by SMA and for research. There’s a promising gene replacement therapy that will be tested in babies with SMA starting this year.

“We wish the cure would be for him but at the same time, we gotta help the people that are gonna be diagnosed tomorrow,” says Tony.

A first annual walk and run in honor of Jadon will be held Saturday, April 6th, at Rolling Ridge Elementary School in Olathe. For more details and to register, click here.