With JETT Ride 2020, Hains brothers continue fight against Duchenne MD

They rode substantially fewer miles than before and devoted just one day of their time to the cause, as opposed to several weeks in the past.

But in every other way, Luke and Lance Hains' commitment to their  younger brother, Levi Hains, and those like him who are battling Duchenne Muscular Dystrophy, has never been stronger.

Not that they needed to, but Cedar Crest grads  Luke and Lance reaffirmed their devotion to Levi and those fighting Duchenne  by organizing, participating and fundraising for JETT Ride 2020, a modified version of the JETT rides  they've taken part in the previous two years.

But because of the COVID-19 pandemic, the JETT Foundation was unable to hold its typical two-week, 800-plus mile bike trek through multiple states this year and the families that ride in it each year had to do some improvising to keep the fundraising momentum going.

So Saturday, Luke, Lance and 13 of their friends and family, hopped on their bicycles for a 62-mile trek through Lebanon County on behalf of Levi and his fellow Duchenne patients. The ride, which followed the same route as the recent Tour de Lebanon cycling event, began at the Hains' South Lebanon home at 8 a.m. and also ended there early Saturday afternoon.

"They really are the best brothers," said Perlita Hains, the boys' mother, who hosted the event along with husband Gordy Hains, said of Luke and Lance. "They adore their little brother, they'd do anything for him. It's just extra special (this year) because it's in our hometown. They've raised a lot of money - Luke and Lance alone have raised $5,000 - and that goes right to the JETT Foundation that helps families that need things that insurance doesn't cover. It's amazing."

Though they know very well of the importance of such events to fight Duchenne,an  incurable muscle disorder similar to Lou Gehrig's disease that has Levi unable to walk for the last two years, Luke and Lance look at their efforts as simply having their brother's back.

"It really means a lot to me," said a Lance, a freshman-to-be at West Chester University, where Luke is going to be a junior. "Seeing my brother grow up ( and become more affected by Duchenne) as time goes on, you definitely want to do it because with all this money it will help a lot of kids in the future who are diagnosed with Duchenne."

"It's tough, not many people realize the assistance (Levi) needs on a daily basis. It's kind of frustrating sometimes. People don't realize what he goes through, so it means a lot to have my friends and these people come out and support him."

"I've learned from year one why I do it," Luke said. "Because (Levi) has been in a power chair since he was like 10 or 11. Every year it's the same motivation, but definitely every year it means more and more. It's a great cause."

Added motivation came from the fact that most of the other riders were Luke and Lance's high school and college friends, who gave their time and effort as well for Levi, who turns 14 on Monday.

"That means a lot," Luke said. "I'm just grateful that they're taking their time to do something. It should be a fun ride."

"A lot of my friends are riding, and my brothers' college friends are riding as well," Lance said. "It's really different, but we still wanted to find a way to raise money and awareness for Duchenne."

Levi wasn't present for the start of the ride at 8 a.m., because he was doing what most teenagers do on a Saturday morning - sleeping in. And that's because Levi is just like any other kid his age with the exception of the fight he must wage against his body every day.

"He can't wait to see everybody, but he is not a morning person," Perlita said with a laugh of Levi. "He's good, he's relatively stable. He lost his ability to walk two years ago, and that was a little hard for us. But he's a champ. He's our hero, he really is."

"He's just like a normal kid," Lance said. "People might look at him differently because he's in a  power chair, but he's a totally normal kid, he just can't talk and walk as well."