Demarcus’s story: Being a whole person, not a diagnosis

Demarcus refuses to let anyone define or limit him.

"Usually, when you're really smart, you're the nerd in class. But I’m the kid making jokes in class, even though I get straight A’s. And I play sports but I’m also in choir. I like to play games – but I also really like to read,” he says. “I don’t fit into any one box.”

Twelve-year-old Demarcus is a charismatic, driven kid with a dream of playing high school football, like his older brothers. And while severe asthma has always been part of his life, he won’t let it decide what he can or can't do.

Getting connected to the high-risk asthma clinic

Since he was a baby, Demarcus has struggled with asthma and allergies. His mom also has asthma and so does one of his brothers. “But Demarcus’s asthma and allergies are a lot more severe,” says his mom, Shanice. “He’s allergic to just about everything – including grass, trees and dust.”

Over the course of his life, Shanice has needed to take Demarcus to the hospital dozens of times for severe asthma flare-ups – in California, Washington, Arizona and Texas. All told, she estimates he’s missed more than 30 days of school due to asthma.

But in the last year, with the help of the Severe Asthma Clinic team and the Asthma Management Program at Children’s Health℠ in Dallas, Demarcus’s asthma control has improved.

“Over the last year, we’ve only been to the hospital once,” says Shanice. “Part of that’s because he’s been able to get biologic shots.”

Finding the right medications

Biologic shots are a long-acting way to decrease a child’s response to environmental triggers. They can provide more consistent, effective asthma control because they build up over the first couple of months.

As soon as Demarcus was discharged from his last hospital visit, the Children’s Health Pulmonary team coordinated an appointment with the Children’s Health Allergy Clinic. Demarcus received his initial biologic injection followed by monthly therapy at home.

“Biologic therapy can be very beneficial for difficult-to-manage asthma patients. And some families are hesitant about using injections to manage their child’s asthma. But for children like Demarcus, they can be life-changing,” says Sharon Fuentes, APRN, CPNP-AC/PC, Pulmonology Nurse Practitioner at Children’s Health.

The clinic helped secure insurance approval for Demarcus’s monthly biologic shots, arranged for the necessary supplies and trained Shanice to safely give the injections at home – because the family lives a few hours away from the hospital.

“Many families have tried ‘everything’ without success, but once a child transitions to the monthly injection, their symptoms drop significantly – and kids are able to be a kid again,” says Fuentes.

The benefits of a personalized asthma action plan

The family's personalized Asthma Action Plan has also given them a confidence boost and greater control.

Instead of wondering what to do when symptoms change, Demarcus’s asthma action plan spells out exactly which medications to use – and when they need to seek additional care.

Demarcus himself can easily tell you what each of his multiple medications do for him and what he needs to do to best care for himself.

Fuentes describes Demarcus as a curious, observant and smart kid – with a lot of self-awareness and motivation.

“He can really tell you how he feels and what he does to help himself,” she says

Staying active and getting support at school

The school nurse was concerned about Demarcus going out for football because of his severe asthma, but his care team stepped in to advocate for him. They let the nurse know that Demarcus can and should play.

“Demarcus absolutely should be as active as possible because being active helps prevent weight gain, improve endurance and build confidence in children with asthma,” Fuentes says.

They also made it so Demarcus could carry his own inhaler – instead of having to go to the nurse’s office every time he needed it.

Thanks to this additional advocacy and support, Demarcus excelled in pre-athletics, which helps students prepare for school sports starting in seventh grade. During pre-athletics, Demarcus participated in conditioning exercises – including suicides and bear crawls – to prepare for football.

“Pre-athletics has been great and I’ve only needed my inhaler a few times,” he says.

The added support of social work

Demarcus' favorite part of going to the Severe Asthma Clinic is working with the physical therapist to help strengthen his lungs.

“I recently did the max running test on the treadmill and did better than most adults with asthma,” says Demarcus.

His mom appreciates seeing all the members of his care team, including his pulmonologist, allergist and a dietitian – in a single visit.

“As a parent myself, I know how nice it can be to come and see all your child’s providers at once – instead of missing work and school multiple times,” says Fuentes.

Having social work be part of his team and every visit has also been helpful.

After an unexpected car fire destroyed his entire medication bag on the way to an appointment at the clinic, the team’s social worker worked with the family’s insurance to get all his medications replaced and ready at the pharmacy by the next day.

“I was freaking out because there are all these insurance restrictions on how often you can refill prescriptions and Demarcus can’t go long without his meds,” says Shanice. “But social work took care of it all super quick.”

The team has also helped cover out-of-pocket costs for medications, provided asthma supplies and advocate for safer housing by sending a letter to their landlord documenting Demarcus' severe environmental allergies.

Going for it

Shanice is grateful for the multiple ways the asthma management team has helped support her family and Demarcus.

As he continues to pursue his dream of playing football, Demarcus offers up some powerful advice for other kids with asthma.

"Don't let asthma ruin your dreams," he says. "But don't ignore it either. Learn about it. Be aware of it. Instead of thinking outside the box, think about what you can do with the box."

Find expert care for severe asthma

Children with severe asthma may benefit from advanced treatment options, including biologic therapies, when traditional medications aren't enough. The Children's Health Severe Asthma Clinic brings together specialists from multiple disciplines to create personalized care plans that help children better manage their symptoms and get back to the activities they love.