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Changing the Lives of Kids with SMA

Changing the Lives of Kids with SMA


“When Allison came back from her first ride on her own, she said to me, ‘I’ve never really seen our own neighborhood before’. And I’m thinking, ‘Oh my God, you’re free’.”

“Back in March, the phone started to ring, and then it rang off the hook for three weeks straight,” said Jason Kraft, the company’s CEO. “We were probably 200% up in sales through June. It was nuts.”

Electric Bike Technologies produces electric bicycles, electric tricycles, and electric bike conversion kits at an 18,000-square-foot facility in Croydon. Kraft sold thousands of the battery-powered two-and three-wheelers so far this year, a milestone that makes him proud. But it’s the trikes he’s giving away for free that bring him the most joy.

‘The Girl That Launched 1,000 Trikes’

Since January, Kraft has gifted 10 electric tricycles to kids who have spinal muscular atrophy (SMA), a genetic disorder that destroys motor neurons, nerve cells in the spinal cord and lower part of the brain that control muscle strength and movement. The disease progressively causes muscle weakness and atrophy.

“Allison is the first little girl who made this happen — I call her the girl that launched a thousand trikes,” said Kraft.

Kraft met Allison Heinrich in August 2019, when she came to the warehouse for a test ride. Allison, now 11, was born with type 3 SMA, considered the least severe form of the genetic disease. Unlike type 1 and type 2, type 3 doesn’t usually shorten life expectancy or impact, until later in life, the ability to breathe. But severity varies, and most people with SMA struggle with walking long distances, using stairs, and balancing. Many also cope with their muscles giving out, leading to sudden falls that can cause serious injuries. And all who have SMA get weaker over time.

As for riding a regular bike? It’s just not possible.

For Allison Heinrich, an 11-year-old with spinal muscular atrophy, having an electric bike allows her to feel like a normal kid again.

Currently, Allison can walk only about 50 feet before needing a break. She is one of four children — and also a triplet — and her SMA makes keeping up with her siblings a challenge. Growing up, she was often left out of everyday activities, from basketball to biking.

“We thought we’d be this family that took off to do these statewide cycling trips. But we had one kid that couldn’t do it,” said Kim Heinrich, Allison’s mom. “I remember when Kim was about 9, we tried to squeeze her into a trailer, but she’d grown to the point she felt humiliated and uncomfortable, and I knew we couldn’t do it anymore.”

So Allison stayed home with her mom while her dad took her siblings out for rides. Heinrich was heartbroken, knowing her daughter felt left out.

“I’d been looking for a way she could participate, and that’s when I started looking at electric bikes,” Heinrich said. “In 2016, I found one that would work, but it was $5,000 and my family was in no position to pay for something like that.”

With endless SMA-related expenses, money is always tight. But Heinrich didn’t give up. Eventually, she discovered a new option, at less than a third of the price — the Liberty Trike.

An Electric Bike For All

The Liberty Trike is Electric Bike Technologies’ best-seller — a 56-pound tricycle, with a battery that lasts from eight to 20 miles. After several email exchanges with Kraft, Heinrich and Allison made the two-and-a-half hour drive from their home in Anne Arundel County, Md., to Croydon so that Allison could put the Liberty Trike to the test.

“We arrive, and she walks 30 feet and has to sit down,” recalled Heinrich.

But then Allison got on the trike. Within seconds, she was like a different kid, Heinrich said.

“She’s just insanely happy, happier than I’ve seen her before, and she becomes this instant rock star on the bike,” said Heinrich.

Witnessing it all is Kraft. And immediately he knows — he’s going to give this bike away for free.

“She goes right to level 5, right to the max at 12.5 miles per hour, and she’s zipping around like any normal kid,” said Kraft. “I’m talking to her mom and she starts describing SMA to me, and then it just struck me, ‘How much can we give away this year?’”

Soon after, Kraft began working with Heinrich to identify other kids with SMA who could benefit from the electric tricycle. So far, he’s gifted 10 bikes, a number he plans to double in 2021.

“You have the ability to pedal as little or as much as you want,” explained Kraft. “You can pedal, or you can use a throttle, or you can use something called pedal assist, which supplements your own effort.”

Jason Kraft, CEO of Electric Bike Technologies, stands with a Liberty Trike. Since January, Kraft has gifted 10 electric tricycles to kids with spinal muscular atrophy.

While Kraft describes the Liberty Trike as an equalizer for all, it was never intended for kids; 80% of those who buy the trike are over 65 years old, mostly seniors who want to stay active but have trouble with balance and mobility.

“It absolutely filled my heart to learn we created something that helps people of all ages,” said Kraft.

‘She Gets to be Part of the Neighborhood Bike Gang'

Another youngster now cruising around on a Liberty Trike is 11-year-old Mckenna Ellixson of Doylestown. She has clocked over 200 miles on her Barbie-pink tricycle since Kraft gifted it to her in July. For Mckenna, who also has type 3 SMA, the bike has been life-changing.

“The more they’re using their muscles, the better, so there’s the exercise aspect, but there’s also that sense of independence and inclusion,” said Mckenna’s mom, Amy Ellixson. “She’s out there every day. Kids come to the door and ask, ‘Does Mckenna want to come on a bike ride?’ She gets to be part of the neighborhood bike gang.”

Doylestown's Mckenna Ellixson, left, and her sister Meghan, right, head out for a bike ride at Buck County's Peace Valley Park.

Both Mckenna and Allison are being treated with Spinraza, the first approved drug used in treating SMA. Spinraza is designed to stop the progression of the disease, but it’s most effective when started at an early age. It didn’t become available until 2016, well beyond when Mckenna and Allison were infants.

But even with early treatment, most children born with SMA will face at least some degree of lifetime challenges. Devices like electric tricycles can help keep spirits lifted.

“When Allison came back from her first ride on her own, she said to me, ‘I’ve never really seen our own neighborhood before," said Heinrich, holding back tears. “She was stopping and looking at people’s yards. And looking at the rabbits, and squirrels. And I’m thinking, ‘Oh my God, you’re free.’”

Credit: By Grace Dickinson @GraceDickinson from the Philadelphia Inquirer, published Dec. 08, 2020.

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