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'All I Do Is Worry': A 4-Year-Old's Journey To Remain Healthy While Waiting For A Heart Transplant Amid Coronavirus Pandemic

PITTSBURGH (KDAK) -- For one local girl waiting for a heart transplant, the stay-at-home order from Gov. Tom Wolf has been especially hard.

Lily was born with a heart syndrome and a rare neurological disorder.

Now her dad is struggling with how to balance her care with concerns about the coronavirus.

"Sometimes, you don't get much sleep. If you're sick, you don't get to lay down," said Cliff Ayres, Lily's father.

Ayres is a single father in Washington County.

He says he is getting less rest since the outbreak because he fears Lily's symptoms are worsening.

(Photo Credit: KDKA)

"She has a valve that's leaking real bad," Ayres said.

Those complications would normally cause him to take Lily to their clinic. But in the midst of the outbreak, he now has to balance her medical needs with protecting her from potential exposure to the virus.

"We're trying time keep our patients from traveling back and forth to Children's Hospital, just to limit their exposure," said Dr. Shawn West, a pediatric cardiologist at Children's Hospital.

Lily's doctor also put her on oxygen 24/7 as a way to manage her symptoms without needing to leave home.

Ayres says telemedicine check-ins with her medical team have also helped. But all of these coronavirus precautions add even more stress to caregivers.

"All I do is worry," Ayres told KDKA News.

"Cliff has done a great job raising Lily and keeping her as healthy as she can at home," said Dr. West, one of Lily's doctors.

Lily's dad says he's doing all he can to weather the coronavirus storm and keep Lily healthy because otherwise, he fears the worst.

"If a heart was to come available, she wouldn't be able to take the heart because she'd be too sick," said Ayres.

Lily has been on the transplant list for over two years.

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