SEAFORD, Del. - As the legislative session continues in Delaware, a number of big changes could still be on the way to the first state.
However, for one Seaford family, it could be the opportunity to take action that could potentially save their son's life.
Six months after Ryker Lyons was born, his parents, Brooke and Aaron, took him to the doctor because he had stopped putting his weight on his leg. After about a six-month diagnosis process, they received the horrifying news that Ryker has Duchenne Muscular Dystrophy.
"The day we got his diagnosis, it's like, part of your soul dies," says Brooke Lyons. "When you find out that your child has a terminal illness I mean what do you do?"
"No parent should ever have to fathom burying their child at some point in their life," says Aaron Lyons.
The terminal illness affects one in every 3,500 male births worldwide, in which the muscle tissue in the body, including the heart, is slowly destroyed and replaced by scar tissue. Ryker currently takes vitamin supplements, and by age six can start receiving steroid treatments. The Lyons' hope for Ryker to walk on his own within the next few weeks, but by age 10, he could be in a wheelchair.
"He's going to have what a normal child would have and then it's going to be taken away from him," says Aaron. "I think that's what really does it in for me."
Brooke says she felt helpless, until she decided to take action. On March 29th, the week of Ryker's second birthday, Brooke plans to walk nearly 40 miles from her home in Seaford to Legislative Hall. Among her goals, she wants legislators to consider signing the MD Care Reauthorization Act of 2014, an extension of the federal law signed back in 2001, to help expand and sustain research.
"Our main goal is to help raise awareness on the Delmarva Peninsula," says Aaron. "We want to help save our son's life as well as all the other little boys out there that have been diagnosed, whether it is through a cure or through prayer."
Brooke says she has been working hard to train, and hopes to leave at 6:00 AM and make it to Dover by dinnertime.
"I have to save my sons life," says Brooke. "He's the biggest, most incredible blessing. It's taught me to appreciate my children so much more, to know how precious their lives are."
The Lyons have already fundraised thousands of dollars for MDA research through "Ryker's Fight" wristbands, and they are holding a concert fundraiser on March 22nd. For more information on their fight, and how you can get involved, visit Ryker's Fight Facebook page.
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