Ravaged by rare genetic disorder, Ottawa mother makes a public plea
Nicole Bogart, with files from Leah Larocque, CTVNews.ca
Published Monday, March 18, 2019 11:23AM EDT
Last Updated Monday, March 18, 2019 4:06PM EDT
An Ottawa-area mother suffering from a rare genetic disorder is overwhelmed with gratitude after a public campaign to raise money for a life-altering surgery was successful.
Patrice Hall was born with two rare diseases, but the one currently wreaking havoc on her body is ectodermal dysplasia, a rare genetic disorder that affects the growth and development of the skin, hair, teeth, and bones.
The disease has caused the bones on the right side of her face to weaken to the point it may not support her teeth or eye socket. Without a multi-stage bone graft, her bones will continue to degenerate and the damage will continue to spread, eventually causing her facial structure to collapse.
“The bone loss would continue and it would affect more parts of my face,” Hall told CTV News. “I wouldn’t have support in the mandible region, so a lot of my natural teeth that are left would fall out.”
The surgery would mark Hall’s sixth procedure to combat the effects of the disease; however, Hall claims the costly procedure is not covered by OHIP or private insurance.
After several attempts to help the young mother, her doctors suggested that her family start a GoFundMe page to help fund the $20,000 needed for the life-altering surgery.
“I am asking for your support to help Patrice raise these medical costs,” reads the GoFund Me page started by her husband Dwayne. “Being on maternity leave, having a chronically sick infant and not being eligible for medical coverage, makes finances challenging.”
In one month, the campaign has raised $21,750 in support of Hall and her family. The family will donate any additional money raised to the Canadian Organization of Rare Disorders (CORD).
“There are families that I know who don’t have much that have helped me throughout this situation and I am thankful,” Hall said.
“Sometimes I wonder what’s next — but my main concern is my son.”