It’s not the life Rachel Hatchie imagined her kids would be growing up, who would have to deal with sunburn Rothmund-Thomson syndrome (RTS).
His daughter Jais was diagnosed at 20 months and his son Nicholas was diagnosed at 8 years old.
“It is a rare cancer-causing syndrome and since 1856 there have been 300 documented cases of RTS,” Hatchi said.
She said the syndrome left both her children with bone and skin cancers, as well as a host of medical constraints on their short lives.
Children with RTS have to limit their time in the sun because their bodies can heat up quickly and experience bone pain with slow growth, and they will need to undergo cancer screening.
On hot, sunny days when most kids are playing outside, Hatchi said her kids have to be extra careful and hide themselves from the sun to protect themselves from dire, medical consequences.
“They know their routine: sunscreen, good skin care, limit outdoor time. They really do their best,” Hatchi said.
Despite her mother’s best efforts in trying to avoid a cancer diagnosis, 14-year-old Jayce was diagnosed with osteosarcoma last June, a malignant bone tumor in her left knee, which the mother described as “the most loved of parents”. Bad dream”.
“We are in a fight for his life,” she said.
“For us it’s a road we’ve known because in 2001 we lost our eldest son to a fatal brain tumor. So, never hearing those words again.. that we could lose another child, that’s all. Heavy,” said Hatchi and tears welled up in his eyes.
She continued to say that Jayce’s cancer diagnosis was delayed because of COVID, which aggravated the pain in her knee. The extended waiting period only added to the family stress.
But Hachi is now on his way to Saskatoon, where he’ll stay for 12 weeks of chemo treatment and then knee surgery. a costly stay that has prompted them to seek help from the community a gofundme Page.
Hatchi explained that the family would need to spend a lot on hotels, along with other travel and living expenses.
Jayce’s treatment will take Hachey away from her job as a nurse. She says, despite her financial concerns, the mom needs to be next to her daughter so that she can support as much as she can during Jayce’s cancer battle.
“What they want to see in the tumor is that basically 90 percent of it is dead and then we decide there whether it’s going to be a limb-sparing surgery or if Jayce loses her leg,” Hatchi said. And then she gets extra chemo.”
He said additional weeks of chemo would be needed after knee surgery because osteosarcoma is a type of cancer that can spread to the lungs and other bones of the body.
Jayce’s doctors say she has a 70 percent chance of battling cancer, odds that are helping the family stay optimistic.
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