TAMPA, Fla. — Coping after a diagnosis is different for many people, especially when getting diagnosed with an illness at a young age.

It's why the Muma Children’s Hospital at Tampa General Hospital (TGH) is making the diagnosis process a bit easier with child life specialists.

What You Need To Know

  • Two brothers in Tampa were diagnosed with Pompe Disease only one month apart

  • Pompe Disease is a rare genetic condition that causes muscle weakness and gets worse over time

  • Child life specialists at Tampa General Hospital teach children about their treatments and help them feel comfortable

  • The teach through medical dogs and with the help of pediatric facility dogs

Their job is to educate families and children receiving treatment.

Paige Rechsteiner is a certified child life specialist at Muma Children’s Hospital at TGH. “When they’re coming back time and time again, they’re building those coping skills, they’re more familiar with the hospital, they don’t see it as such of a scary place they see if it’s more of a place they’re coming to feel and get better,” she said.

Child life specialists have been the support system for two brothers who were both diagnosed with a rare genetic condition: Pompe disease, within a month of each other. 

Despite long hours in the hospital, you’ll always find Giovani Mendoza full of joy.

Every two weeks, he spends time with Millie, the pediatric facility’s dog. A year ago, he was diagnosed with Pompe disease, a rare genetic condition that causes muscle weakness and gets worse over time.

It affects one in 40,000 people in the United States.

Having Millie by his side gives him an emotional boost as he undergoes treatments.

“I feel pretty warm. I mean, my mom is here, sometimes my dad and my family, so I guess we go through it together,” he said.

Giovani receives infusions every two weeks, but he’s not alone.

Just a few feet away, his younger brother is receiving the same treatment. Steve was diagnosed with Pompe disease a month after Giovani.

The diagnosis has brought the brothers even closer. When they’re not in the hospital, you’ll find them having fun like any other kids, playing video games.

For Steve, it’s the competitive games he loves the most. “Sometimes we versus in baseball,” he said.

They’re keeping each other accountable and trying to stay active. Giovani says it’s important for him.

“It’s a precaution that we take, so maybe it does work and it helps us more in the future when we grow up,” he said.

The brothers are learning how to navigate life with this diagnosis. Working with their child life specialist has helped diminish their fear of the hospital.

For example, a medical doll used by the specialists teaching them about their ports and the importance of infusions.

Doctors say although there’s no cure, getting diagnosed at such an early age is helping the brothers get treatments that could make a difference later.

“I’m feeling pretty good. Doctors say I’m doing pretty good too, so I’m just pushing it to the next week, which is the next diffusion,” Giovani said.

Although it’ll mean continuous trips to the hospital, Giovani says he can get through this diagnosis with a strong support system by his side.

The Muma Children’s Hospital at TGH has seen a few cases of Pompe disease over the years. With the help of child life specialist, they’re able to create a space where children feel safe though what can be a scary diagnosis.