Bryanna McNeely remembers holding her little girl for the first time and hearing a cracking sound.
“It didn’t really process,” she says. “Only when we were in Edmonton did they tell me everything about her disease.”
Her name is Alivia Faith Orlias and she was born with severe osteogenesis imperfecta, more commonly known as brittle bone disease — a genetic disease in which bones fracture easily.
Alivia Faith Orlias was born on Jan. 13 with a rare genetic disease. (Photo courtesy of Bryanna Mcneely)
A GoFundMe has since been created to help the young mother and her newborn baby with medical expenses after they were medevacked to Edmonton earlier this month.
McNeely says, “the first few days were really hard on me.”
“They took an x-ray and then they found out that her bones were broken,” she said.
After a couple of days of treatment, McNeely says, “she’s doing pretty good. She’s sucking her own bottle and we can move her a little bit.”
Although there is no known cure for osteogenesis imperfecta, families rely on treatment plans.
McNeely says the family is grateful for the support they’ve received online and that the funds will go to ensure she can stay in Edmonton, comfortably. Especially since her husband and two eldest daughters had to stay back in Yellowknife.
“That’s what they always do,” she says. “I really love that about my community.”
So far, the fundraiser has raised $500.
“Thank you to everyone that’s praying for Alivia,” says McNeely. “She’s getting stronger every day.”
