One man will climb a mountain to raise money for Spinal Muscular Atrophy

OLATHE, Kansas - One Overland Park man is going to new heights to help raise money for a deadly childhood disease.

Tony and Kristin Burks’ life was turned upside down when their newborn Jadon was diagnosed with Spinal Muscular Atrophy when he was just six week old.

Children with SMA lack a necessary protein to build muscle. SMA is the number one genetic killer of children under two years old.

"Jadon has what’s called type one, which is the most severe type of SMA. And that means he will never have the ability to hold his head up independently. He will never have the ability to sit upright. He will never walk,” explains Kristin.

Earlier this year, Tony told his boss, Jim Baker, that he needed to stay home with Jadon full time.

Tony says, “he wanted me to do a leave of absence, just hold my job for a certain amount of time. But I really didn’t want to put a time frame on that cause I didn’t want it to be, ‘Oh, I’ll be back in three months’ because the reason for that would be really bad.”

Tony has been off work for six months, and he hopes to stay home for six more.

Once Tony took off from work, Baker knew he wanted to do more. He decided to create Climb4SMA to combine his love for mountain climbing with his desire to help Jadon.

Baker started mountain climbing in 2007, and his next climb is for Jadon. In January he will climb Mt. Aconcagua in Argentina, one of the seven summits of the world.

Their goal is to raise $50,000, but Baker hopes they will surpass that. “I think when people catch wind of this and get involved, I think people are going to see this isn’t just a disease that you’re pouring money at. There’s an opportunity to cure this disease,” Baker said.

50 percent of SMA babies don’t make it to their first birthday, so after Jadon turned one in June, Tony and Kristin kept the celebration going. They treasure every day with Jason.

“It’s literally a daily routine. We kiss him and hug him. We tell him we love him cause he may not be here tomorrow,” Tony says.

And even though their journey is tough, Kristin and Tony focus on the hope and the climb.