Team Ethan: Meet the 10-year-old Decatur boy serving as MDA’s National Ambassador – Times Daily

Like many young children, summer camp, from water tubing to zip lining to water sliding, represents Ethan LyBrands favorite time of year. It is where the 10-year-old Decatur boy, despite his battle with Duchenne Muscular Dystrophy and dependence on a power chair, can just be a kid.

Its really a great experience. Its so much fun there, Ethan said of the Muscular Dystrophy Associations summer camp at Camp ASCCA (Alabamas Special Camp for Children and Adults). You get to make lifelong friends, and its honestly made me into the kid I am today.

That kid, the funny, curious, caring, confident fifth-grader at Hartselle Intermediate School, who loves playing wrestling with his dad on PlayStation, learning about history and collecting Transformers he named his power chair after Bumblebee, his favorite Transformer will represent the Muscular Dystrophy Association as national ambassador.

The Muscular Dystrophy Association announced Ethans selection in January.

This is an incredibly special family, said Mary Fiance, director of public relations for MDA. They charmed us all since the very beginning. They are incredible advocates. Being able to share their story and raise awareness is so important.

The LyBrand familys story began in June 2011.

After noticing their son struggled to gain weight and keep up with other children his age, Josh and Jordan LyBrand searched for answers. One test revealed elevated enzymes: a sign of muscular dystrophy.

Two days before Ethans second birthday, a diagnosis came: Duchenne Muscular Dystrophy.

According to the Muscular Dystrophy Association, Duchenne, the most common form of muscular dystrophy, affects one in 5,000 boys. The disease causes a lack of dystrophin a protein that protects muscles which leads to muscle fibers breaking down and weakening and leads to difficulty in walking and moving.

Its hard to move around sometimes and sometimes people with MD never end up walking, Ethan said. I wouldnt call it painful, its just that you cant do all the same things that other people can do. You have trouble moving and sometimes you need a wheelchair.

A month after receiving Ethans diagnosis, Josh LyBrand, a collaborative teacher and assistant baseball coach at Huntsville High, and Jordan LyBrand, a guidance counselor at Hartselle High, contacted the local MDA chapter.

Theyve been like family members, Josh LyBrand said. Day in, day out, they are raising funds for research, raising funds to send kids to camp and advocating for the rights for these kids and adults with neuromuscular diseases. They are amazing.

I couldnt have said it better myself, Ethan added.

The diagnosis of Duchenne and connection with MDA transformed Josh, Jordan, Ethan and Ethans younger sister Chloe into advocates. They formed Team Ethan for the MDA Muscle Walk in Huntsville, participated in fire departments' Fill the Boot fundraising drives and organized Decaturs Ethan LyBrand March to benefit MDA, which raised tens of thousands of dollars. Amid all of that, Ethan served as the 2016 MDA Alabama Goodwill Ambassador for MDA.

The association contacted the LyBrand family in 2016 after seeing a photograph of Ethan riding a zip line at Camp ASCCA. Josh LyBrand credited the MDA summer camp for instilling confidence in his son.

Camp is a week where these boys and girls get to be kids. There are no limitations, no restrictions. They get to be free, Josh LyBrand said. When it came time to talk about getting a chair, we asked Ethan. He said, Yes, if it will give me more independence and allow me to do things more on my own. That goes directly back to summer camp and him making friends with kids in wheelchairs. He doesnt see a difference in those kids and anyone else.

As national ambassador, Ethan will share his story and his experiences with MDA. He'll also campaign for donations, which support research to find a cure, advocacy efforts and experiences, such as summer camp.

We support over 43 neuromuscular diseases, including muscular dystrophy, ALS and related neuromuscular diseases, Fiance said. (Money raised) goes to research that is ongoing. It goes to over 150 MDA care centers, including Childrens Hospital in Alabama where Ethan goes. It goes to support our advocacy efforts for our families.

Due to the nations coronavirus concerns, Ethan is reaching out to supporters via the internet. Recently, Ethan and Josh created a virtual video for Harley-Davidsons Daytona Bike Week, which raises funds for MDA. The event generated more than $60,000.

It is hard living with (Duchenne Muscular Dystrophy), but at the same time, I would like to teach people that you can still be happy when you have this terrible disease and live your life like all the other people, Ethan said. Maybe we could find a cure someday.

The MDA also created an online presence for the annual Shamrocks campaign, when businesses and restaurants sell paper shamrocks, at mda.org.

Since a lot of people arent being able to go out, the shamrock has gone viral. People can participate no matter where they are. You can support and transform the lives of people with neuromuscular diseases, Josh LyBrand said.

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Team Ethan: Meet the 10-year-old Decatur boy serving as MDA's National Ambassador - Times Daily