Taking Steps to Raise Money for FSHD — 2,000 of Them!

Twins Oscar and Sebastian Spink, 11, may not be your typical “Avengers” superheroes, but they are certainly pursuing a gargantuan task that would have impressed even Tony Stark.

The boys, diagnosed with facioscapulohumeral muscular dystrophy (FSHD) in 2019 and die-hard fans of the Marvel Cinematic Universe, are attempting to climb 2,000 stairs, the approximate height of the movies’ Avengers Tower, or Spink Tower as they call it, throughout April to raise £2,000 (about $2,600) for Muscular Dystrophy (MD) UK.

It’s a challenge for the twins, who have progressed rapidly since their diagnosis three years ago and now require wheelchairs to walk long distances and get around outside of the house. They have the more rare early onset form of the disease, which occurs in around 1 in 200,000 people, according to the FSHD Society.

Oscar and Sebastian go up and down the stairs twice every day. (Courtesy of Kerry Spink)

“We get tired to a certain point and then the pain starts coming in,” Sebastian said in a video interview with Muscular Dystrophy News Today. “Going up is more difficult than going down.”

It’s a task made all the more difficult by their shortened leg muscles that cause them to walk on their toes and accentuated lordosis, the curvature of the back to compensate for muscle weakness, the boys’ mother, Kerry Spink, said.

They are nearly halfway to their goal after climbing up and down the stairs in their home in Lymm, Cheshire, near Manchester, twice a day. The twins go up and down the stairs together, and Spink recently shared a video of them slapping hands as one made the climb and the other descended.

The funds are also rolling in on their JustGiving page, organized by their mother. As of April 19, 60 supporters have helped raise £1,451.

Spink created a Family Fund through MD UK to raise money for FSHD research and the organization. The Spink family will have raised a total of £30,000 (over $39,000) if the boys reach their £2,000 goal for their “Avengers April” challenge.

Spink said they support MD UK because the organization was the first one that gave her direction and helped her make sense of her sons’ diagnoses.

When Oscar and Sebastian transitioned to high school, which comes around sixth grade by U.S. standards, the organization guided the boys’ school on best practices for their safety and occupational health.

MD UK also put them in touch with other families affected by FSHD, which in turn gave Spink and her family emotional support. The charity will host a family fun activity weekend in September with other families affected by muscular dystrophy.

“They were like the lighthouse in the storm,” she said. “It’s quite hard to look back at how your life gets turned upside down and not knowing where to go. They really were brilliant and [we] couldn’t have asked for more support.”

This is not the first physical undertaking the boys have attempted to raise money for a cause. In 2020, they took 26 laps around their home’s garden on April 26, as part of The 2.6 Challenge for the Virgin Money London Marathon. Participants were encouraged to come up with a challenge that related to the date of the marathon, which normally brings in tens of millions of pounds for thousands of U.K. charities, but was canceled because of COVID-19.

The first indication that something was off with the twins was they were partially deaf at birth. Oscar and Sebastian received their first hearing aids when they were 7 to 8 weeks old, said Spink, who is an early onset patient representative for FSHD Europe and FSHD UK.

When the duo started to show weakness in their faces, doctors believed their deafness was the culprit. Then, when the boys were around 7 years old, teachers noticed they couldn’t do the same physical activities as their peers. Sebastian started to have problems with his hips and walking long distances.

Because of these changes, their speech and language therapist recommended the boys see a neurologist. The diagnosis came out of the blue in the mail just before their 9th birthday, Spink said.

FSHD has no cure, however, Fulcrum Therapeutics plans to launch a Phase 3 clinical trial of losmapimod in adults with FSHD in the second quarter of 2022. Spink hopes that more research can be done for children with FSHD, too.

Spinks assemble!

The family brainstormed a fundraiser they could do this year and the Avengers Tower challenge seemed like a perfect fit. Oscar and Sebastian became Marvel fans after a friend showed them one of the Marvel movies, and they haven’t looked back since. When they were younger, the two would dress up in superhero costumes. Both went as Spider-Man for their 4th birthday party.

The twins dressed as Spider-Man for their 4th birthday party. (Courtesy of Kerry Spink)

Now 11, the boys have grown out of the costume phase and instead wear officially licensed Marvel T-shirts. In an interview with Muscular Dystrophy News Today, the two quizzed each other on trivia and recited their favorite lines from “Avengers: Age of Ultron” and “Black Panther.”

For Sebastian, it’s a tongue-in-cheek quote from Hawkeye, who’s become one of their favorites as he uses hearing aids in the new Disney+ series — “The city is flying, we’re fighting an army of robots and I have a bow and arrow.” Oscar prefers the scene where Black Panther turns to Captain America and says, “Get this man a shield.”

When they’re not watching Marvel movies, the boys attend school and also play in a power wheelchair soccer league affiliated with Manchester United, despite being fans of rivals Manchester City.

Oscar hopes to be an architect and design accessible buildings one day once he finishes school. Sebastian wants to be a professional powerchair soccer player for England.

Spink is inspired by their positive attitude and humor even with the adversity they face.

“It’s not always easy. Sometimes it’s really tough,” Spink said. “But these guys make me incredibly proud … they’re very funny, very cheeky. But very bright, intelligent boys that have a great future ahead of them.”