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'There's nothing more isolating than a hospital room': Families talk about a life of distancing

Navigating a pandemic with a weak immune system
Posted at 5:50 AM, Mar 31, 2020

GRAND RAPIDS, Mich. — The constant sanitizing and social distancing might not feel normal for most people as we continue to fight the spread of COVID-19. But, for those with weakened immune systems, this way of life has always been the norm as contracting COVID-19 is even more dangerous for this population.

Aly and Kyle Peacy and Sophia Cerniglia know all-too-well what life is like with social isolation. Kyle and his young son, Dean, have dialated cardiomyopathy. It is a congenital heart disease in which the left side of their hearts are stretched out, thus not providing as much oxygen to the rest of their organs. As a result, they have weakened immune system.

Cerniglia has cystic fiborsis, a lung disease which includes thick, sticky mucus that builds up in the lungs and makes it harder to breathe.

These families can't chance being around a friend or loved with a little cold or the sniffles because to them, the outcome can be life-threatening.

That's why the Peacys had to pull their boys from preschool even before this pandemic, as well as canceled plenty of social gatherings and vacations.

"There's nothing that I've experienced that's more isolating than being in a hospital room," Aly Peacy recalled. "We spent a month in the hospital with Dean and you're in a small hospital room. You can't see anyone from the outside. That's kind of what's in the back of my mind as we're going through all of this is."

Cerniglia, who's currently recovering from Influenza A, was recently released from the hospital. Doctors inserted an IV into her chest, knowing it would be safer for her to recover at home during this Coronavirus outbreak.

With virtual hangouts growing more popular during these days of social distancing, it has been the only way Cerniglia has been able to connect with her fellow CF friends over the years.

"We're not actually supposed to be around other CFers," Cerniglia explained. "And, if you are, you have to be six feet apart, It's heart wrenching. It's really, really hard and it doesn't get any easier honestly."

Both families hope to drive home the point about embracing this extra time with loved ones and keeping the bigger picture in focus.

"It's not about our own individual selves," Peacy said. "It's about the macro picture."

"The quickest way we're all going to get through this is leaning on each other and being kind," Cerniglia added. "A hug, I don't feel it's ever gonna feel the same quite after this."

Fortunately, the Peacys have relied on the Children's Healing Center in Grand Rapids. It is the nation's first sterile recreation center for kids with weak immune systems. Kids, like Dean and his family, can go to escape that isolation at home and connect with other families just like them.

While it's closed during this outbreak, they are offering virtual sessions so kids can keep in touch with their friends. .

Cerniglia is the founder of the Breathing Becomes Effortless Foundation, a resource that helps adults with cystic fibrosis with their financial needs.