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Utah family fights to keep infant with chronic lung disease breathing

Posted at 5:46 PM, Jul 31, 2016
and last updated 2016-07-31 23:27:07-04

SALT LAKE CITY -- Loving parents are moving mountains to keep their daughter, 10-month-old Zariah Donavon, alive.

Zariah suffers from a severe case of chronic lung disease called Bronchopulmonary Dysplasia, and she is on life support.

In mid-July her parents, Vilayvone Thipsouvan and Shawn Donavon, received the wonderful news that Zariah had been accepted into a special BPD infant treatment program at Nationwide Children’s’ Hospital in Columbus, Ohio.

Dr. Daniel Malleske is an assistant clinical professor of pediatrics at the Ohio State University Medical Center, and he specializes in neonatology at Nationwide Children’s Hospital. Malleske has already worked with doctors at Primary Children’s’ Hospital in Salt Lake City to help change Zariah’s ventilation settings to get her ready for her flight to stay with him and his program at Nationwide.

A few weeks ago, Shawn Donavon told FOX 13 News that Primary would be unable to keep Zariah alive.

“From there the hospital had one of its largest care conferences, six neonatal doctors, many nurses, many nurse practitioners, and the conclusion of that meeting was that Zariah has the sickest lungs that Primary Children’s’ has ever seen in a patient, and they felt like medically a zero percent chance for Zariah to survive,” Donavon said. “The doctors came to us and asked us to let go. As a family we thought about it. We prayed about it. We reached out to a higher power and he told us to keep fighting."

They did not want to give up, but they also started losing hope.

“Zariah would look me in the eyes and tell me to keep fighting for her, babe would hold my hand and she would give me signals and signs," Donavon said. "And as a father I told Zariah I would never leave her.”

Prayers and social media posts came pouring in on Facebook, and Donavon’s website he created, ZaraiahStrong.com.

It was emotional for them to have so much help. Shawn said he had to give up work to stay by Zariah’s side 24 hours a day, seven days a week.

He found his skin-to-skin contact with her and massaging her gently helped calm her breathing down when things became difficult for her and she was not inhaling all the oxygen she was being given. Dr. Malleske said those comforting efforts clam Zariah down and allow her to breathe easier, so Shawn knew he had to always be by her side.

Family, friends, neighbors and strangers helped them in every way.

“We've had meals dropped off four to five days a week," Donavon said. "We've had the community help out with house and yard work. We've had the community help out with fundraisers."

The prayers, though, made it happen, he said.

“Oh my goodness where do I even begin?” said his wife, Vilayvone. “From the get-go everybody has been so, so amazing. From our coworkers to our neighbors. I've had donation of vacation hours so I can focus on Zariah.”

She said the prayers and posts of support and love and the warm meals from everyone kept her strong when she felt like she was struggling to fight.

“They lift us when it seems like that burden is too much, and it feels like your knees are going to buckle,” she said.

To keep up with Zariah’s progress and donate to her medical costs and the costs to fly the family back and forth from Ohio to Utah, visit the Zariah Strong website or this GoFundMe page.