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Knowing no bounds

Santa Clarita family carries son with muscular dystrophy to top of Half Dome

Posted: June 29, 2014 2:00 a.m.
Updated: June 29, 2014 2:00 a.m.

The Marquez family poses for a photo during their "In the Warehouse" video interview at The Signal.

 

Enveloped by the tall pines and rocky peaks of Yosemite National Park, the Marquez boys explored the open fields and bright wildflowers as their parents watched on – this is where the Santa Clarita family came to escape.

But on a recent visit, 8-year-old Peyton had different plans. Tilting his head toward the sky, he locked his eyes on the summit of Half Dome and pointed.

“I want to climb that!” he said to his 10-year-old brother Logan.

Parents Bonnie and Ethan traded glances, one of apprehension and one of consideration. But they had made a promise.

Climbing Half Dome would be a feat for any anyone, but for the Marquez family, it would be an extraordinary challenge.

When Peyton was diagnosed with Duchenne muscular dystrophy, his parents made a decision. They would do everything they could to make his dreams come true -- despite his genetic disorder, Peyton would want for nothing.

To make his wish work, they would have to carry Peyton all 17 miles and 5,000 feet up the peak.

“He’s going to have the life that he wants to lead,” Ethan said.

Diagnosis

“I always noticed he was a little weaker or didn’t run as fast as the other kids,” Ethan said of Peyton in his earlier years.

Though they never expected anything serious, Ethan and Bonnie had a blood test done on Peyton, almost by chance, they said.

“They have a certain look they give you, doctors do – and you just know it’s not good,” Ethan said.

With a long list of medical issues to consider, the young parents didn’t pay much attention to the bottom line: Duchenne’s Muscular Dystrophy.

So when Ethan got the call last year with Peyton’s diagnosis, he hung up unsure of what it really meant. But Bonnie knew.

“She just looked at me,” Ethan said. “I think we both broke down.”

Immediately understanding the gravity of her son’s diagnosis, Bonnie remembers the first few days as a fog.

“I didn’t sleep for three days,” she said.

Checking on their boys during the interview, the couple watched Peyton place a hand on Logan’s wrist.

“When they first told me about it, I was sad,” Logan said. “But I didn’t know what it was.”

Peyton’s hand slid up to rest on the side of Logan’s face.

“Now I do,” Logan said, taking breaths to ebb the flow of tears, “and it’s kinda been hard.”

Trying to find the silver lining in the worst imaginable situation for a parent, Bonnie and Ethan decided they would do everything they could for their boys.

“You can do this with grace and humor and faith and strength and hope,” Bonnie said, “because we’re in this together.”

Living with MD

Muscular dystrophy is a group of disorders caused by different genetic mutations, each with a varying prognosis and degree of symptoms.

Peyton’s disorder, Duchenne muscular dystrophy, is the most common and aggressive form in children, with an average life expectancy of 25 years, they said.

“It’s a continuous loss in muscle over time,” Ethan said. “Once the muscle breaks down, it won’t regenerate.”

While the burn during a workout – the breakdown of muscle fibers – is healthy for most people, for Peyton it represents a loss that will never be replaced, never be built back up again, they said.

“He’s missing a protein in his muscles that allows him to rebuild the muscle,” Ethan said. “It’s a terminal illness.”

To slow the degeneration, Ethan and Bonnie try everything possible. Peyton practices physical therapy, takes medication and vitamins and uses a scooter to stay mobile while reducing the breakdown of muscles.

They monitor the progress in his organs, which are also muscles, seeing every kind of specialist from a cardiologist to a social worker.

“We can’t see what happens inside his body,” Ethan said. “(The disorder) is a ticking time bomb.”

Though doctors first diagnosed Peyton with a specific mutation that would make him a candidate for a clinical trial, a new round of testing confirmed he has a different, much more rare mutation.

Peyton is the only person in the world with his specific genetic mutation, Bonnie said, weakening his chance at securing a spot on the clinical trial.

“The only thing I could say to the doctors was: ‘Well, if he’s going to have a rare disease, it might as well be really rare,’” Bonnie wrote in a recent blog.

Nothing with this disease goes as planned, she continued.

“We really don’t know the answers,” she said. “This is a hard journey to be on, and we’re just doing the best we can.”

Climbing Half Dome

“Bonnie thought I was completely crazy,” Ethan said.

When Ethan took Peyton’s wish to heart, Bonnie remained practical. But when it came to decision time, they both knew they had to make this work for their sons.

The 17-mile round trip would take them 14 hours to ascend about 5,000 feet in elevation. They would have to attach themselves to a set of cables built into the slab of rock at the very top of the peak, to keep them from sliding off the side.

And they would have to carry Peyton on their back the whole way.

“We knew this would be our first and only chance to do this,” Ethan said. “Next year he would be too heavy.”

After a quick Google search, they also knew they were not doing this alone.

Ethan and Bonnie reached out to their family and friends, inviting them to join their journey.

“I couldn’t believe how people, especially our friends, came together,” Ethan said.

About nine others dropped everything – took time off from work, drove out to Yosemite and took turns strapping Peyton onto their backs – whether they were hikers or not, the family said. Others helped out by watching their youngest, a 2-year-old, for the trip.

They left early in the morning, prepared for more than a full day of climbing. But it was worth it.

The whole way, or at least between naps, Peyton chatted, laughed and soaked it in.

“I saw trees, waterfalls and rivers and mountains and rocks,” Peyton recalled. “A snake crossed the trail, and I got to play in the snow at the top.”

Instead of weighing the hiker down, each person who carried Peyton took off ahead of the group, rejuvenated by the cause of their mission, Ethan said.

“I think they were more determined than we were to get Peyton to the top,” Ethan said with a laugh.

When they got to the cables, the air was thin, and the 400 feet were grueling, they said.

But when Peyton made it to the top, they made history. To the best of their knowledge, Peyton is the first child with DMD to make it to the top, Ethan and Bonnie said.

“We don’t want to sit back during his childhood,” Ethan said. “We’re going to make a difference.”

Making the difference

Striving to give to more than just their son, Ethan and Bonnie have made efforts to spread awareness, support research and increase quality of life for MD patients.

This year, they successfully petitioned the FDA to reinstate a clinical trial that would help MD patients, though they are no longer sure if the trial will benefit Peyton, they said.

They started Peyton’s Project, an organization aimed at the advancement of quality of life, and they are awaiting nonprofit approval.

“It’s a very expensive disease,” Bonnie said.

People with MD need costly medications and equipment to increase mobility, such as scooters or mobile chairs. And eventually, electric lifts on staircases are needed, as well. Those costs are not always covered by insurance.

“It (mobility equipment) would give kids the freedom to do things their friends are doing,” Bonnie said. “It gives them a sense of independence.”

Through Peyton’s Project, Ethan and Bonnie plan to host events and raise funds.

“We want to provide encouragement and inspiration – don’t waste the time you have,” Bonnie said. “We’re not putting off anything.”

 

For more information on how to help Peyton and the Marquez family, visit their website or Facebook page.

Comments

missyJk: Posted: June 29, 2014 10:01 a.m.

Beautiful and inspiring story and an amazing family



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