Rockin’ for Rudy benefit show raises funds for local family

Last September, local educator/musician Sawyer Johnston and his wife, Serena Murison, had their world turned upside down.

Their infant son Rudy was diagnosed with the rare genetic disease LAMA2 merosin-deficient muscular dystrophy, which means he lacks the protein necessary for his muscles to “stick” to his basement skeletal membrane. Because of this condition, Rudy experiences extreme weakness throughout his body, is unable to walk or crawl and will have feeding and breathing difficulties as he ages.

But as is often the case when members of the Asheville music community are in need, Johnston’s peers have rallied and united to help out. On Sunday, March 10, at The Orange Peel, the Rockin’ for Rudy benefit show will raise funds for the family with a full day of ’70s music.

Day by day

Rudy was born on March 29, 2023 — the same day his father turned 31. Johnston recalls singing The Beatles’ “In My Life,” as Murison delivered their son.

Early on, the newborn showed signs of hypotonia (i.e., muscle weakness) and gradually experienced mobility issues. When Rudy was 5 months old, he underwent an MRI and also had a genetic panel sent off for analysis. The results showed two pathogenic mutations of the LAMA gene.

“We were devastated,” Johnston says. “I remember living in a fog for quite a while. It’s not something you ever expect or anticipate. It changes the narrative of what you had in mind for your life. And it took us a while to recalibrate.”

Johnston adds that there’s a strong online community that’s been helpful in supporting his and Murison’s adjustments. The couple have also done research on what lies ahead for their son, and they receive immense support from their friends and family.

However, Johnston is happy to report that Rudy is cognitively on track. His son is learning words and how to sign. Rudy also excels at making his parents laugh.

Still, there is plenty for Rudy’s parents to contemplate and approaches to consider. “How do I make this kid happy? How do I get him from point A to point B? He can’t move. You’re with him the whole time. You carry him wherever you go,” Johnston says. “Or, you know, he’s great at sitting. So he sits on the floor, and you bring the world to him. Or you bring yourself to the world with him in your arms. That’s how it works.”

There’s also significant concern about Rudy getting sick, particularly during flu season and COVID-19 spikes. Since the start of the year, Johnston has been wearing a mask at Charles T. Koontz Intermediate School, where he teaches English language acquisition and social studies.

“I’ve been telling people it’s like I’m living in 2020 while everyone else is living four years in the future,” Johnston says. “Because I have to protect him. When you don’t have muscles, you don’t have a diaphragm. And when you don’t have a diaphragm, you can’t cough and clear your pathway.”

The financial realities of paying for the needs of a child with LAMA2MD likewise present a challenge for this middle-class family. Along with Johnston’s modest teacher’s salary, Murison is a speech pathologist who now primarily focuses on PlaySpark, the business she started in 2020 with Kylie Jeffrey. The company, which focuses on autism and disability awareness, creates T-shirts, stickers and various other merchandise.

“It all seems pretty serendipitous that that is her focus,” Johnston says. “She has quite the following of neurodiverse people and disabled people on Instagram. And so it’s actually been really nice to have that support and love coming to us from that community that’s felt so supported and seen by Serena for such a long time.”

Helping hands

There’s immense support from within PlaySpark as well. Jeffrey launched a GoFundMe campaign in early January to help Murison and Johnston pay for several key projects and expenses that need to be addressed within the next three years to fully care for Rudy.

These costs include a wheelchair-accessible bedroom/bathroom (approximately $15,000) a wheelchair-accessible van ($65,000); ramp renovations for the Murison/Johnston home ($5,500); and medical expenses ($10,000 to $16,000). Among the additional costly items are medical equipment, therapy appointments and yearly travel to Cincinnati Children’s Hospital, regarded as the top muscular dystrophy hospital in the U.S.

As of press time, the GoFundMe has raised nearly $20,000 of its $100,000 goal and allowed the family to purchase a Permobile Explorer Mini wheelchair for Rudy. The device facilitates self-initiated movement and early exploration for young children with mobility impairments. As evidenced by a gleeful video Murison posted to YouTube in late January, Rudy “had a blast learning how to use the joystick” as he propelled himself in the Explorer Mini.

Those funds will grow at the Rockin’ for Rudy event thanks to local drummer Elzy Lindsey. The math teacher at Montford North Star Academy befriended Johnston while they were both working at Asheville Middle School. Their bond strengthened when Johnston added his vocals and guitar skills to Lindsey’s band The Lefties.

“We all love Sawyer and Serena. We’ve watched them grow together and start a life,” Lindsey says. “So as a friend, you feel absolutely helpless. And so I was kind of like, ‘What can we do to not feel so helpless in this situation?’”

It didn’t take long for inspiration to strike. Lindsey’s first musical collaboration with Johnston was several years ago at a benefit show for a fellow performing artist, so, in October, Lindsey pitched that type of event to Johnston and Murison, who approved of the plan.

“It’s a relatively easy process because we have such good friends in the community,” Lindsey says. “And everybody wanted in. As a matter of fact, more people wanted in than we had time for people. So, I was able to put it together really quick.”

Music heals

The Sunday, March 10, event runs from 2-8 p.m. and will feature nine local bands playing primarily 1970s covers. The decade is the one where Lindsey’s and Johnston’s tastes overlap most and has encouraged them to fine-tune some longtime favorites.

“I’m doing ‘Dirty Work’ by Steely Dan, ‘Thunder Road’ by [Bruce] Springsteen and ‘Mama Told Me Not to Come’ by Three Dog Night,” Lindsey says. “It’s going to be a diverse ’70s catalog.”

Rockin’ for Rudy will also include a potluck meal and a silent auction. Additionally, the event’s 11-month-old namesake will be in attendance as well. Johnston notes that his son loves music. “I Will” by The Beatles is his favorite song. “That will get him out of any jam,” Johnston says. Meanwhile, if Rudy doesn’t like what’s playing at home, “he’ll not so politely ask you to change it by crying.”

Additional bands performing at the benefit are Dollars on Ice, Broadtones, Atomic Sauce, The New Variants, The Long Distance Relationship, Pick Your Switch Reunion, The Tallboys and Double Love & The Trouble. Along with these acts, Rudy will get to witness his dad’s bandmates Andrew Graves and Dean Cates onstage as the full lineup of Sensation of Falling comes to town.

“To be able to have ‘Uncle’ Andrew and ‘Uncle’ Dean up there playing music for him, it’s great,” Johnston says. “It’s perfectly fitting.”

The afternoon’s impact is part of Johnston’s ongoing relationship with music and its importance in his life. He says that, particularly early on in the diagnosis, playing with Lindsey and The Lefties provided a needed distraction.

“I like to write songs, and it took me a long time to be able to write again after the diagnosis because there’s so much to process,” he says. “But slowly that’s coming back, and I’m grateful to have it as an outlet.”

Johnston also made a New Year’s resolution to write one poem each day to try and capture his emotions as a form of therapy. And as he gets back into songwriting and pulls from those daily reflections, feelings have naturally flowed.

“I wrote a song the other day and I couldn’t play it for Serena. I was crying — I couldn’t play it,” Johnston says. “That’s not melodramatic: That’s just what happened. And it was out of nowhere, you know? It’s unexpected.”

The support from Lindsey and the other Rockin’ for Rudy participants has likewise proved meaningful. Ever since Rudy’s diagnosis, Johnston’s bandmates and friends have continually shown up for him and his family, providing what he calls “a vast well of support” that he can draw from when times get tough.

“A full Orange Peel on a Sunday would just be mind-blowing and certainly uplifting for this family,” Lindsey says. “A community is this; this is what we do. And so I’m hoping that it’s a huge success and that people, no matter what your persuasion — even if you don’t like ’70s music — come support this because it’s going to be a really amazing, fun time for an amazingly good cause. You couldn’t have a better cause than this: life itself.”

To learn more, visit avl.mx/del.

WHAT: Rockin’ for Rudy
WHERE: The Orange Peel, 101 Biltmore Ave., theorangepeel.net

WHEN: Sunday, March 10, 2-8 p.m. $20 suggested donation