Alabama boy named MDA National Ambassador

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Ethan Lybrand named his yellow power chair Bumblebee, in honor of his favorite Transformer.

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Ethan Lybrand was diagnosed with Duchenne Muscular Dystrophy just two days before his second birthday.

It’s the kind of news that could devastate a family. But after the initial shock, the Lybrand family, who live in Decatur, decided to channel their emotions into positive action.

They got involved with the Muscular Dystrophy Association, participated in firefighters boot drive fundraisers, MDA Muscle Walks and any other events that could raise awareness and money for neuromuscular disease research.

That dedication to the cause did not go unnoticed. A couple of years ago Ethan served as the MDA Ambassador for Alabama. This year, he was chosen to be the organization’s National Ambassador.

As MDA’s National Ambassador, Ethan will travel the country sharing his story and advocating for research that can help thousands of people living with neuromuscular disease.

“What I’m planning to do is teach people about my life and how I stay strong when I have this horrible, horrible disease, and how I can live life like a normal kid,” Ethan said.

Like other normal 10-year-olds, Ethan loves Transformers. In fact, when his parents shopped for a new power chair for him, he insisted that it be yellow.

“My mom was like, ‘Why are you choosing the yellow color?’” Ethan said. “I said, ‘Mom, it’s going to be Bumblebee!’”

Naming his chair for the gregarious yellow Transformer that recently had its own breakout movie turned out to be not just a fun choice, but a great way to keep things positive, said Ethan’s dad, Josh Lybrand, a special education teacher and assistant baseball coach at Huntsville High School.

“Instead of having to say, ‘Come on, Ethan, it’s time to get in your wheelchair,’ we can say, ‘Time to get in Bumblebee,’” Josh said.

Every summer, like other normal kids, Ethan goes to camp at Lake Martin. At Camp ASCCA (Alabama’s Special Camp for Children and Adults), nothing is impossible just because you’ve got a neuromuscular disease.

At MDA Summer Camp Ethan and his friends can go horseback riding, canoe, play mini-golf or take part in archery, ride a zipline or waterslide, or even go water tubing (Ethan’s favorite), all adapted for accessibility.

Ethan will be traveling a lot over the next two years as the face of MDA, and it’s no coincidence that one of his advocacy focuses will be better accessibility during air travel.

Currently, said Ethan’s mom, Jordan Lybrand, people who are dependent on wheelchairs must transfer from the wheelchair or power chair to a regular airplane seat and their chair is stored in the baggage compartment.

“I think they should be able to pull in and lock down with their chair,” said Jordan, who is a school counselor at Hartselle High School. “You’re basically taking their legs and storing them underneath the plane.”

The main focus, of course, will be raising money for continuing research on neuromuscular diseases. Currently, newborn screening is only available for a couple of neuromuscular disorders. It would be great, Josh said, if eventually there could be newborn screening for all neuromuscular diseases.

The Lybrands didn’t find out about Ethan’s disorder until he was a toddler and they began looking into concerns about him not gaining weight.

“The earlier you detect a neuromuscular disease, the faster you can get ahead of it,” Josh said.

Want to help?

Donate at MDA.org

Shelly Haskins writes about points of pride statewide. Email your suggestions to [email protected], or tweet them to @Shelly_Haskins using #AlabamaProud.

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