PHOENIX — An Arizona family is advocating for a bill that would expand the medical conditions that newborns are screened for.
Senate bill 1020 would add Duchenne muscular dystrophy to the screening process.
Anthony Castle, 24, has Duchenne muscular dystrophy, a life-limiting muscle disorder. He hasn't let his medical condition get in the way of living his life to the fullest. He has a passion for the outdoors and loves to hike.
He's hiked the Grand Canyon and Camelback Mountain, among others, with the help of volunteers and firefighters.
“I inspire people," Anthony said.
'I kept getting treated like I was overreacting.'
But life has not always been easy for Anthony and his family. Soon after Anthony was born, his mother, Jill, knew something was wrong. Anthony was hitting milestones late, but doctors assured her that was normal and he would catch up.
“It was really frustrating, too, because I kept getting treated like I was overreacting, you know, I was just this crazy mother," Jill said. “But by the time he turned three, he was barely talking. And he was still falling down a lot. And I knew something was wrong.”
After begging for evaluations, she finally got one for Anthony.
"So they ran a blood test. And they test the levels of muscle destruction," Jill said. "A normal level would be 200. And he was 35,000. So at that time, we got the diagnosis of Duchenne muscular dystrophy.”
Their lives changed.
Jill was told Anthony would stop walking between 8 and 10 years old and go into a wheelchair. Then would come problems with his lungs and heart.
“And there were no treatments out there. And we should just go home and love him. That was literally the advice that we got. And so yeah, I wasn't okay with that," Jill said.
Thanks to her and Anthony's willingness to participate in clinical trials, he started getting treatment at age six.
Today, Jill said there are eight FDA approved treatments with more coming.
“And you can start these treatments right away. And it changes the entire trajectory of the disorder," Jill said.
That's why the Castles are advocating for the passage of SB1020. In addition to starting treatment immediately, early detection would help parents prepare for the challenging medical journey ahead.
“Finding out early allows you to save up for a handicap van which is astronomically priced, or to maybe not buy a house that has stairs if you're purchasing your first home for your family. Maybe some of those choices would be different. And it would be less burdensome on the family. If they knew that ahead of time, there's a lot of things you could plan for," Jill explained.
Anthony has bravely gone before the legislature alongside his mom and the bill, sponsored by Senator T.J. Shope, has received bipartisan support.
It's now part of budget negotiations. The bill requires funding to support the testing and labs needed to process results.
The Castles hope by sharing their story, the bill will pass and be signed into law so future families dealing with Duchenne muscular dystrophy have one less mountain to climb.
“That would make Arizona the fourth state in the country to adopt newborn screening for Duchenne. So it would be quite a victory and Arizona can lead the way for all the other states," Jill said.
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