Two Brothers Making the Most Out of Life With SMA
Participate in a paintball war. Meet Snoop Dogg. Be the first disabled person to go to space. These are just a few of the 40-plus items on Zarek DeMarco Elizondo’s bucket list.
With his older brother, Zachary Markel Elizondo, by his side, Zarek, who has spinal muscular atrophy (SMA) type 2, is determined to cross as many items off the list as he can. He’s already achieved five, including getting on the main stage at the Vans Warped Tour traveling music festival and meeting the rapper Wiz Khalifa.
The inseparable duo are documenting their experiences and adventures on their YouTube channel, website, Patreon, and podcast, bringing their family focused, positive worldview to viewers all over the internet.
They’ve branded their content the “Sweet Life of Zack and Zarek,” and with the tagline, “Remember, we love you more,” the Elizondo brothers are checking off Zarek’s bucket list, educating people about SMA, and spreading joy.
It was their younger sister, Zarinna Jade Elizondo, who inspired them to bring their story to the world. She died from SMA type 2 in December 2017, when she was 19 years old.
Spinraza (nusinersen) was approved in the U.S. in December 2016 as the first targeted treatment for SMA, and Zarek began treatment with this Biogen therapy. He recently switched to Evrysdi (risdiplam), marketed by Genentech (part of the Roche group), an oral treatment first approved in August 2020.
Before her death, Zarinna had wanted to start a YouTube channel documenting their experiences with SMA. In a tight-knit family, the loss was difficult for them both, but they found solace in honoring her in the videos they make.
“We eventually hit this point where we realized we can either go down a very dark path, or continue the love and joy that she would want us to do,” Zarek, 25, said in a phone interview with SMA News Today from his home in San Benito, Texas.
Beyond continuing Zarinna’s legacy, Zarek and Zachary want to give other families dealing with SMA something to which they can relate. They recently partnered with Genentech on a campaign called SMA My Way, which showcases other SMA contributors, such as Shane and Hannah Burcaw from Squirmy and Grubs, and Kevan Chandler, a writer and founder of a nonprofit focusing on enhancing mobility.
For SMA Awareness Month, Zarek will be publishing a few blog posts each week throughout August on the “Sweet Life” website, which chronicles how SMA has affected his life. The brothers also will bring awareness to the disease through their Instagram, Facebook, Snapchat, and Twitter accounts, which have about 1,600 followers combined.
An unstoppable team
Zachary and Zarek experience almost everything together. Even when Zachary, now 28, was playing basketball, baseball, and football, Zarek was involved, coaching his brother through drills or providing an analysis. Zachary calls him a “student of the game.”
The same applies to music. Zachary is the bassist in a rock band called …And The Hero Prevails, and Zarek is featured at the end of one of their songs, repeating the words “Don’t give up.” Zarek is also in tow when Zachary’s band performs in venues with thousands of onlookers. He has a chance to socialize with groups that …And The Hero Prevails opens for, like The Offspring, Puddle of Mudd, Saliva, and Deftones.
“I’m so grateful I get to bring Zarek along and show him this side of the world as well, because he showed me so much,” Zachary said. “ I’m truly grateful for what we’ve created between each other and the love we have.”
Zarek has started writing and producing his own rap songs under the name Big King Zilla. Zachary wrote the music, and Zarek and some friends came up with the lyrics for his first single, “King Energy,” due to come out at the end of August.
The name and single is based on a revelation Zarek had years ago, when struggling through a mental health crisis. His first name in Greek means “God protects the king.” He realized that everything in his day, including eating and dressing, is done for him, similar to that of an ancient king.
“It turned my mindset from, ‘Oh, poor me,’ to ‘I’m a king,’” Zarek said. “That’s what pushed me to not see [SMA] as a downfall.”
In addition to working on his rap career and growing the YouTube channel, Zarek spends his time designing custom sneakers; painting on his iPad, holding the Apple Pencil in his mouth to control the strokes; and playing first-person shooter video games with an Xbox Adaptive Controller. Soon, he’ll have a contraption that will allow him to press extra buttons attached to his face and his head.
Even so, some activities are impossible for Zarek, because of his reliance on his power wheelchair, extremely limited muscle strength, and the metal rods that support his spine. However, Zachary does his best to include his brother in whatever they do.
One example came at a Vans Warped Tour in 2018. It had long been Zarek’s dream to see his favorite artists live, and the brothers stayed until the end of the day to catch the band Issues.
That day also marked the tour’s last stop in San Antonio, so crews had begun tearing down the event, including the wheelchair lift that would have allowed Zarek to access a platform to easily view the concert. All that remained was a rain-slicked, steep ramp with no rails.
So Zachary mustered all his strength and pushed Zarek in his 400-pound wheelchair up the ramp. The band noticed the brothers struggling, and started to cheer them on.
“Zack has this gift of moving mountains for me,” Zarek said. “If there’s even the slightest way for me to experience something, he will figure it out and make it happen.”
Living life to the fullest
For Zachary, the thought of his brother missing out on parts of life because they are inaccessible drives him to do as much as he can to involve Zarek in whatever way possible.
“It hurts knowing that [Zarinna and Zarek] don’t get to experience that much beauty in some things,” Zachary said. “The things he gets to experience, I want him to feel it to the fullest.”
It’s this idea, along with Zarek realizing his own mortality after his sister’s death, that led to the creation of the bucket list.
“My whole mindset of this almost invincibility Superman mode got shook,” he said. “I’ve always known life is short, but I truly realize how short it could be.”
The brothers have never thought of being apart. Recently, Zachary went to Disney World with his girlfriend’s family without Zarek, and while he says he enjoyed himself, he missed his brother and family.
Part of their connection comes from a natural affinity for each other, mixed with parents who always encouraged them to be there for each other. Zachary said the love his family gave overflowed so much that they had no choice but to give it back into the world.
“We were raised to be there for one another no matter what,” Zarek said. “And as we’ve gotten older, that has gotten stronger and stronger.”
Although Zachary does a lot for his brother, he also acknowledges that it takes a village. They live with their parents, and friends are always willing to help whenever possible. Zarek also has a nurse who comes from 2–10 p.m. every day, as well as one that covers the night shift.
They emphasize that their relationship is not a one-way street, with Zachary doing everything for Zarek. They help each other in the best way they know how. Zachary’s experience with Zarek has given him a lot, he said.
“It’s really opened my eyes to all the little things in life that are really important,” Zachary said. “Zarek and Zarinna have taught me more than anything I could ever ask for. And they’ve made me the man I am today.”