The parents of Halle Krawczyk are undergoing perhaps the most torturous of frustrations.
Halle, daughter of Carolyn and Matt Krawczyk, and sister to 15-year-old Hunter, suffers from a rare cancer – one in 20 million – called ‘poorly differentiated chordoma.’
Doctors in both Canada and the U.S. have told them that, although the cancer is incurable, it can be held static by surgery to remove the tumours on two upper vertebrae and the clivus behind the nose. Proton beam radiation following the three needed operations could prolong her life indefinitely.
The family has been told that a world-renowned doctor and his team who are best qualified to perform the rare pediatric surgery are based in Pittsburgh.
However, Carolyn said they have also been told by the Medical Services Plan that the surgery can’t be funded because the Canadian policy is that if a doctor in Canada can do the surgery, then it won’t be covered in the United States.
For some surgeries that might make sense, but not this one, Carolyn says.
With a population 10 times the size of Canada, the U.S. sees 325 cases of chordoma a year, with just five per cent of them pediatric. Then there is Halle’s type of chordoma, a rare pediatric type.
Carolyn and Matt have now resorted to trying to raise the more than $100,000 estimated for the surgeries.
“I think one of the hardest things about this whole battle is fighting to get people to understand what we’re dealing with,” Carolyn said, noting that Halle must have a spinal fusion on top of the two surgeries removing the growing tumours.
“We’ve got one chance, we don’t want to mess it up.”
She added: “Even though the Canadian system has denied us funding, Canadian doctors, alongside American doctors, say this is her best chance.”
Carolyn noted that Halle was diagnosed more than three years ago and has been through failed chemo, immunotherapy and a trial drug. Although she looks well and has amazed doctors with her current abilities, scans show the tumours are growing rapidly.
“Halle is an avid competitive gymnast. She is incredibly strong both mentally and physically. She has great talent, she’s incredibly kind, loves to laugh and make others laugh, and she truly enjoys her life,” said Carolyn.
“Halle deserves a chance at fulfilling her life dreams.”
If you would like to help pay for Halle’s surgery, e-transfers can be sent to firstname.lastname@example.org. Or a Help for Halle gofundme page has been set up.
As well, a petition to MSP Canada has been created in care2 petitions under Give Halle the Gift of Her Health this Christmas.