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Seaford to Dover: Mother taking awareness steps for son with Duchenne muscular dystrophy

By Glenn Rolfe

Sussex County Post

SEAFORD -- Sometimes, parents go to great extremes to do what’s best for their children.

In March 2014, Brooke Lyons plans to go the extra mile and then some for her 16-month-old son Ryker.

On Saturday, March 29, Ms. Lyons plans to walk from her family’s Seaford home all the way to the steps of Legislative Hall in Dover in an awareness/fundraising campaign dedicated to son Ryker, who faces a premature death sentence with Duchenne muscular dystrophy.

“Physically I can do this. What I am doing is something that my son will never be able to do,” said Ms. Lyons. “And if this is the only thing I can do for him, then it is everything I will do for him.”

DMD, caused by mutation in the dystrophin gene, is a fast-progressing muscle disease that essentially destroys all of the muscle in the body, including his heart, replacing it with scar tissue. It affects predominantly males -- about 3,600 boys are born with it each year -- although females can carry the gene mutation.

“There is no cure. It is a fatal diagnosis,” said Ms. Lyons. “It’s awful. It is an awful disease. You almost wish that it was cancer because at least then there would be treatment and hope.”

If muscle degeneration is typical, Ryker -- diagnosed with Duchenne MD at age 14 months -- will be confined to a wheelchair by age 10, be on a ventilator in his teens and probably lose life’s battle in his late teens or early 20’s, most likely due to heart failure.

“Call me selfish but this is not enough time. I need more time with my son,” said Ms. Lyons.

“Since we found out the diagnosis I have felt like my hands were tied,” said Ms. Lyons, who said she initially attempted to hold an event at the high school track. “But just all of the legalities of insurances and waiting for this permission and that permission, I finally decided, ‘I can’t wait for someone else to tell me that I can do something for my son.’ This allows me to feel like I am not just sitting idle. I am doing something to help him.”

So the 32-year-old law office paralegal/mother of three has mapped out her 37.6-mile journey on March 29, 2014.

And she recently created a Facebook page called Ryker’s Fight. As of Aug. 20, Ryker’s Fight had surpassed 1,300 members. “It’s been amazing,” she said.

Ryker is the youngest of Aaron and Brooke Lyons’ three children. They have two daughters, ages 13 and 8. There is no past family history of muscular dystrophy.

Ms. Lyons is intent on walking alone but gladly welcomes all of the cheerleaders and supporters that U.S. 13 can handle.

“My heart tells me that as his mother, I need to do this alone,” she said.

Ms. Lyons hopes the thousands of small steps she takes transform into a big step in awareness and support for research through donations and legislation.

“The whole reason why I chose that location (Legislative Hall) is right now there are so many bills out there and not just Delaware legislation but throughout the United States. And really that is what my goal is -- to raise awareness,” said Ms. Lyons. “The leaders that we are relying on, they are voting on bills that could potentially save these boys’ lives. And they may not even know what muscular dystrophy is. How can I let someone hold my child’s life in their hands -- literally -- without them being educated on exactly what it is that they are voting for?”

“So many people have ‘heard of’ muscular dystrophy but they truly have no idea until they have a direct impact,” she said.

Ryker, who turns 17 months old in August, goes back to the doctor at A.I. DuPont Children’s Hospital in October for an EKG and echocardiogram. “They have to start tracking his heart function,” said Ms. Lyons.

Treatments, which include steroids, are available now but side effects Ms. Lyons said are awful. “So are they worth it?” said Ms. Lyons.

In addition to her walk, fundraising is part of Ms. Lyons’ plan. She hopes to raise $100 per mile plus some extra for a goal of $4,000.

Around December, in conjunction with MDA’s fiscal calendar year, she plans to put together flyers and have special T-shirts “not just so much for the event but Ryker’s Fight in general.”

While there’s no cure now, Ms. Lyons is convinced that sometime in the future in some research center a cure is waiting to be discovered. She hopes it’s in her son’s lifetime.

“There is a cure, absolutely, and that’s why I am doing what I am doing,” she said. “It is so frustrating; so many people have heard of muscular dystrophy but even with me, you have no idea what it is until you are directly affected. And my goal is to put not just a face to the diagnosis with my son, but also a life story so people can understand.”

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News Editor Glenn Rolfe can be reached at 629-5505 or grolfe@newszap.com.

http://delaware.newszap.com/southerndelaware/124926-70/seaford-to-dover-mother-taking-awareness-steps-for-son-with-duchenne-muscular-dystrophy

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