This was supposed to be the year Delmis Urquiza ran her first marathon. Like other hopefuls, the 27-year-old Dorchester, Mass. resident looked forward to lining up in Hopkinton with the other runners on Marathon Monday. Unfortunately, the pandemic had other plans. Even before the event was rescheduled, Delmis, who lives with cystic fibrosis (CF), had made the decision to sit this one out.
“The Boston Marathon is just an incredible race, and I wanted to be a part of it, but it was too much of a risk,” says Delmis who wanted to run to raise money for the Cystic Fibrosis Center at Massachusetts General Hospital for Children (MGHfC) where she is a patient. But despite the disappointment, Delmis is still raising money and awareness — with the help of three caregivers, Jess Garton, Christine Treseler and Alex Linden. Jess and Christine are physical therapists at Mass General who are running to represent “D’s team” in September’s virtual marathon. Alex made the decision to wait for the day when she could run with Delmis by her side. Until then, Alex continues to be a cheerleader and will join Delmis to cheer on Christine and Jess when they run in the virtual marathon.
“They are doing this for me, but also as a part of me — they are my heart and my lungs,” Delmis says.
Running with a Secret
CF is a progressive, inherited disease, in which thick mucus builds up in the lungs and digestive system. People living with CF battle repeated lung infections and most don’t live past 40.
As a standout track and cross-country runner at Everett High School, Delmis was able to keep her CF a secret from all but her closest confidants. But her health began to decline following the unexpected death of her father, Humberto, in her junior year.
“[Delmis] wanted to do this to be a role model for other patients so that they could see their chronic diagnosis wasn’t a death sentence. Knowing her has absolutely made me a better person.”
“The emotional and mental stress and just the grief in general did a number on me,” she says. In college and beyond, Delmis struggled through frequent hospitalizations, many lasting two weeks or more. It was during one of those hospitalizations, in the fall of 2018, that she set her mind on running the Boston Marathon.
“Part of my lung had collapsed, and it helped me realize I had to start prioritizing my health,” she says. “I’ve always been a runner — and a marathon just seemed like an obvious goal to shoot for.” With the help of her outpatient physical therapist, Jess Garton, who agreed to be her training partner, the two of them put together a plan to make health her “number one priority.”
CF Causes Bumps in the Road
Within weeks, Delmis had quit her job to focus on training and her health. Along with her morning and evening nebulizer treatments to prevent lung infection, she made exercise part of her daily regimen.
“It was probably one of the best decisions I’ve ever made. I’m the healthiest I’ve been since high school,” she says. But while her running managed to improve her overall health, it wasn’t enough to keep her CF completely in check. In the fall of 2019, she was back in the hospital with another lung infection.
“I remember she was in her hospital bed having a terrible allergic reaction to her IV antibiotics,” says inpatient physical therapist Christine Treseler. “She was itchy, numb and nauseous. She couldn’t complete full sentences without a coughing fit.” Despite her condition, Delmis shared her marathon plans and encouraged Christine to join her. For Christine, who had never run a marathon, it was hard to say no.
“I’ve seen Delmis at her worst over the years,” Christine says. “She wanted to do this to be a role model for other patients so that they could see their chronic diagnosis wasn’t a death sentence. Knowing her has absolutely made me a better person.”
Looking Ahead to the Finish Line
When it comes to her own inspiration, Delmis looks to her older brother, Alex. Like Delmis, Alex also lives with CF, but his symptoms are more severe, and he requires supplemental oxygen 24–7.
“Being able to train for the marathon was huge because I could see his struggles every day,” Delmis says. “His support was amazing and I wouldn’t be anywhere without him.”
Recently, new medications — known as modulators — have improved the quality of life for the bulk of people living with CF. But 10% of patients, including Delmis and Alex, are still in need of effective treatments to slow the progression of the disease. The money raised by D’s Team will help fund patient care and ongoing research at the MGHfC Cystic Fibrosis Clinic.
While Jess and Christine will run their marathons on different days, Delmis is planning to be there to greet them, beer in hand, at their own finish lines. And that’s got her thinking ahead to future marathons. “I’m so grateful for the support I’ve received from them,” she says. “But I want my own chance to run that course and cross that finish line.”
If you would like to support Delmis and her fundraising efforts, please visit her BeCause page.
To learn more about the Cystic Fibrosis Center at Mass General, please contact us.