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Tallmadge boy awaiting double-lung transplant

By ELLIN WALSH Reporter Published: February 19, 2017 12:00 AM
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A chance to win a game of hide and seek.

A chance to ride a bike unfettered.

These are the dreams of 11-year-old Tallmadge resident Mark Frick, who's awaiting a double-lung transplant.

If you can't breathe without oxygen, the tube always gives away your hiding place, Mark says. And you can't pedal away if you're dependent on an oxygen tank either.

Mark's family wants a chance to watch him grow.

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The son of Terrace Teter and Wayne Frick, Mark was placed on the active transplant list in May 2016. He's a happy child, according to his mom, despite his medical problems, which started at a young age.

In the spring of 2007, Mark, then 15 months, was diagnosed with AML Leukemia. He underwent a successful bone marrow transplant with his older sister, Brittani, serving as his donor; however, shortly afterward, Mark developed breathing issues. He was diagnosed with Obliterative Bronchiolitis, a side effect of the chemotherapy he'd received, according to his mom. Now the doctors at Children's Hospital of Pittsburgh in Pennsylvania, are recommending a double-lung transplant.

While they've tried to avoid this outcome for as long as possible, Mark's mom says she realizes the time has come. Mark's lungs are so damaged, doctors say they could pose a problem when he reaches puberty. At the same time, Terrace says, her son can't be too sick to survive the transplant operation itself. So it's a waiting and worrying and guessing game.

"It's a very hard thing to do this," Terrace says, "because we'd be benefiting from another child's life. But Mark's going to be hitting the teenage years and one of my biggest fears is that he'll realize all the things he's not going to be able to do in life. If we do this now he can hopefully have some teenage years like other kids."

But she's scared, she admits, because transplanted lungs usually have a limited life span. That means eventually Mark would have to undergo the procedure again, Terrace says, "But hopefully by then he'll be old enough to make the decision for himself."

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Presently, Terrace says Mark spends twice as long recuperating from an activity than doing it. "It's like an 80-year-old person who has COPD (Chronic Obstructive Pulmonary Disease)," she explains. "They can only walk so far before they're out of breath. Except it's your child."

With transplant-related expenses expected to exceed $50,000, Mark's family has turned to the Children's Organ Transplant Association (COTA), a national charity based in Bloomington, Indiana, for help. "Roughly $6,000" has been collected for Mark to date, according to his cousin, Crystal Mae Smetts. That's a long way to go before meeting the fundraising goal, but they tirelessly share Mark's story with the hope it will inspire others.

The call he's waiting for will be Mark's second shot at a lung transplant. In September 2016, the family was summoned to Pittsburgh, with doctors saying they thought they had a match for Mark. But after Mark was intubated and sedated for the 10-to-12 hour operation, surgeons found the donor lungs were damaged and not suitable for transplant.

"I was so scared to tell him," Terrace recalls, of going to see her son in the recovery room, "and he looks at me and says, 'Well, that's OK. It was a good practice run.' That's Mark. He never complains. A false alarm for new lungs? No problem."

New lungs would give Mark energy and the opportunity to reclaim a social life, his mom says. Right now Mark is tutored at home but sometimes his former classmates Skype him. A Google Chrome Book is on Mark's wish, because it would allow him to complete school lessons from home.

Mark's recovery is expected to last from three to six months after the transplant surgery. Following the operation, he would be on drugs for the rest of his life to prevent his body from rejecting the new lungs. He also would be at a higher risk of infection.

Terrace acknowledges there are risks associated with the surgery. "Parents say all the time they'd give their child the moon. Well, what I want is to give my son more time."

Email: ewalsh@recordpub.com.

Phone: 330-541-9419

Twitter: @ EllinWalsh_RPC

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