Saugus High School senior Peyton Marquez made headlines in October when he was honored with the rest of the Saugus football seniors on senior night.
Born with Duchenne muscular dystrophy, Marquez served as the football team’s manager and was allowed to carry the ball into the end zone, via his electric wheelchair, prior to the Centurions’ game against Canyon High.
That moment was the football team’s way of thanking Marquez for his support and dedication despite being confined to a wheelchair due to his condition.
It’s been quite the journey for Marquez, who is scheduled to graduate from Saugus this spring before attempting to do something that not many people living with DMD are able to do: graduate college.
In the top 1% of his class at Saugus, according to his father, Ethan Marquez, Peyton is hoping to attend UCLA to study electrical engineering. After that, he’s planning to attend the California Institute of Technology with the hopes of one day landing a job at NASA’s Jet Propulsion Laboratory.
“Since I’m unable to compete in sports, I want to do something with my brain because that’s something I can work well with,” Peyton said in a phone interview.
Peyton’s journey to this point in his life has been quite different from his classmates, to put it lightly. At the age of 5, he was diagnosed with DMD, a condition that affects roughly six in every 100,000 people in Europe and North America, according to the Muscular Dystrophy Association.
“DMD is a genetic disorder characterized by progressive muscle degeneration and weakness due to the alterations of a protein called dystrophin that helps keep muscle cells intact,” the MDA website reads.
Peyton’s condition is even more rare in that it is not genetic, Ethan said. Rather, Peyton’s X chromosome mutated, leading to his body not being able to read his genetic code in a normal fashion. That, Ethan said, occurs in approximately one-third of DMD cases. Those who have DMD are referred to as Exon 51 skippers.
Using a book as an analogy, Ethan said it’s similar to having the first word of each sentence being removed.
“You can kind of still follow along with the story, but you’re just missing something in the first part of the sentence,” Ethan said.
Ethan said they were able to pin down the problem when Peyton was about 5 years old. Ethan had a friend with a degree in genetics who pointed him in the direction of UCLA, which has its own research center for DMD.
“UCLA is one of the leaders in the world for medical research regarding Duchenne,” Ethan said in a phone interview. “So, we’re very fortunate that we got attached to that.”
While at UCLA, Peyton participated in a clinical trial for a new drug, Exondys 51, that was supposed to help his muscles regrow.
“What the drug does is it tricks the body to ignore the bad part of the code and go to the next part, so it jumps over the bad part of the code,” Ethan said. “And it gives you just a little bit of what’s called dystrophin that he’s missing in his muscles.”
That trial occurred in 2015, Ethan said.
“It was very interesting because I would have to go to the infusion clinic once a week at UCLA, so we’d have to drive up there,” Peyton said. “They would do the infusion and they’d have some doctors in there watching me and seeing how the medicine was working. And it was interesting to be a part of something like that.”
Ethan said he was open with his son about his condition and what it would mean — most people with DMD are unable to walk after reaching their early teens — because “it’s his body and it’s gonna be his life.”
“He’s pretty smart, so he’s kind of grown up understanding things that were happening,” Ethan said. “And he would just say it on a light note, ‘I have this terminal disease,’ but I don’t think he really kind of understood. He does now.”
DMD is truly a terminal disease, as while new drugs can offset symptoms for a time, they cannot be permanently abated, according to the MDA. Muscular deficiency in the lower legs is the first symptom of DMD and the one that is most easily seen, but over time, heart and respiratory muscles can be affected, leading to death.
Before modern drugs, people with DMD used to die in their early teens, but these days, surviving into their 20s and even 30s is becoming more common.
Peyton is somewhat of an outlier for the rest of the world as he still has the ability to walk over short distances and does not have any scarring around his heart that most DMD patients get around his age, Ethan said.
Ethan credits Exondys 51 for his son’s slowed degeneration. Because of that, Peyton was selected to speak in front of the Food and Drug Administration board to lobby for the drug to be approved.
Despite being young, it’s a process that Peyton said he remembers vividly.
“I had a speech prepared that I had to talk to them about,” Peyton said. “It was a few things, telling them that it worked well, I showed them my strength, I did a big kick in the air to show them how much strength it has given me.”
The drug was not approved the first time, Peyton said, but eventually gained approval after about a year. The FDA announced the approval in a news release on Sept. 19, 2016.
“I feel very good that I was fortunate enough to help other people,” Peyton said. “It’s a really interesting feeling to know that your actions saved countless others.”
Peyton knows that it’s been a long process to make sure that his life is as good as it can be. He’s even aware that his family has had to make sacrifices to ensure his well-being.
Knowing those things hasn’t affected his personality or his ability to stay positive.
“I’ve just been kind of born with the ability to almost light up a room, I guess,” Peyton said.
Things are going so well for Peyton that he’s planning to walk the stage with everyone else at Saugus for graduation.
“I’m really excited to do that and show how much I’ve gone through and that I can still walk the stage like every other person,” Peyton said.
Peyton and Ethan are also planning to run the L.A. Marathon together in March using a custom wheelchair. Peyton uses a similar device when he and his family go to Mammoth, with two skis attached to a seat that he can use to move alongside everyone else.
Ethan said that, for the most part, Peyton is a happy person despite “having to look at the world a little different than most people do.”
Ensuring that happiness has been one of Ethan’s goals throughout Peyton’s life.
“I really try to instill him being positive about everything, because we can all be negative about everything and look at, ‘Wow, woe is me,’” Ethan said. “But one of the things is that most people, when they have kids, they will have their kids and they just expect that the kids will be there tomorrow. There’s always a story too that we hear about, especially holidays or graduations or maybe when kids go off to the military and there is combat, and the kids don’t come home. One of the ways that we look at the world a little different is I know that there’s a fine period of time that I have with my kid, my son, and so we try to do as much as we can together as a family and enjoy the times we have.”
To learn more about Duchenne muscular dystrophy, visit www.mda.org.
