The race is on the find a cure for Jaxon Pursch, a seven-month-old baby with a severe respiratory condition that leaves him struggling to breathe.
Jaxon, who lives with his parents and nine siblings in Saint-Eustache, Que., was diagnosed last October with tracheomalacia, a condition that effects the respiratory system.
The newborn’s breathing is loud and he has respiratory pauses, a symptom that is a constant cause of worry for his mother Marylène Fortin.
“He can basically stop breathing at any second,” Fortin said.
Fortin said she knew the moment he was born there was something wrong. It’s taken several hospital visits and even a surgery at Sainte-Justine Children’s Hospital to properly diagnose Jaxon.
But in the end the hospital said there is nothing more they can do:
“In conclusion, Jaxon Pursch is diagnosed with severe tracheobronchomalacia,” the hospital said in a medial chart summary. “There was no improvement of his symptoms following an aortopexy. Unfortunately, we have little therapeutic options to offer the family at the present time except for HFNC during viral respiratory infections.”
Now the family is doing everything they can to get Jaxon to the Boston Children’s Hospital where the parents believe they have found an expert who may be able to help.
On Saturday, the Jaxon’s brothers and sisters went door-to-door in their neighbourhood selling tickets to a spaghetti dinner to be held next week.
Being able to treat the newborn at a U.S. hospital will be an expensive endeavour, a fact that weighs heavily on Jaxon’s father.
“It’s the fear of the unknown of what’s going to happen,” T.R. Pursch said. “But then being Christian, we know that we have the support of our church, our family, and our friends.”
The dinner is organized by Zachary Marquis, a friend and hockey teammate of Pursch, who volunteered to help them a few weeks ago.
“Inside of me, it’s a little voice that tells me, help them, they need help and I need to help them,” Marquis said.
For T.R. Pursch, Marquis’ help is exactly the kind of community support his family needs at this difficult time.
The family says it’s hard to determine what Jaxon’s health may look like in the future. The family has created a GoFundMe campaign to raise funds for Jaxon.