Living with Duchenne: Dalton Johnson

At first glance, Dalton Johnson is like any other curious and mischievous six-year-old.

"He has a great spirit,” his dad Scott says. "He's always playing, running around."

Elizabeth, Dalton's mom, says, "He loves to fish, play outside with his cousins"

But his grandma became concerned when Dalton started having trouble climbing and keeping up with the other grandchildren. After a battery of tests, a call came.

"My husband got the phone call. He was at home with the kids. He told me it was the most horrible phone call he ever got in his life," Elizabeth said.

"It was terrifying - knowing that we had already done the research - we knew what was coming,” says Scott. “Once they said it was diagnosed for sure - Duchenne - seemed like downhill from there."

Duchenne is a rapidly worsening form of muscular dystrophy. Most children lose the ability to walk by age 12. And while Dalton is doing his best to live a normal childhood, the tough battle ahead is never far from his family's thoughts.

“We think about it everyday,” says Elizabeth. “It's like a dark cloud over us all. Hard to get through the day without thinking about it."

"We have hope that there will be a cure or at least some treatment for quality of life,” Dalton’s dad says. “Maybe he'll walk a little big longer before he has to use a wheel chair. The hearts and lungs will hold out longer."

A lot of that hope has come from MDA. Since the diagnosis, MDA has provided education and support - while continuing the fight for a cure..

"They were the first on the scene,” says Scott. “They were the first person we saw to talk about muscular dystrophy. We had never heard of Duchenne before - they told us they were there to help."

"Even if we never see a cure in our lifetime, just thinking that, helping our children walk and be able to play."

And so Dalton can continue to live a life full of wonder.