It’s not the life Rachel Hachey imagined her kids would have growing up, battling a sunlight disease called Rothmund-Thomson Syndrome (RTS).
Her daughter Jayce was diagnosed with it at 20 months and her son Nicholas at 8.
“It is a rare cancer-causing syndrome and since 1856 there’s been 300 documented cases of RTS,” Hachey stated.
She said the syndrome has left both of her children prone to bone and skin cancer, along with a host of medical hurdles over their short lives.
Children with RTS have to limit their time in the sun as their bodies can overheat quickly and experience bone pain along with slow growth, and they must undergo cancer screening.
On warm, sunny days when most kids are outside playing, Hachey said her children have to be extra careful and hide from the sun in order to protect themselves from a terrible, medical outcome.
“They know their daily routine: sunscreen, good skin care, limit outdoor time. They truly have made the best of the hand they have been dealt,” Hachey said.
Despite their mom’s best efforts in trying to avoid a cancer diagnosis, 14-year-old Jayce was diagnosed with osteosarcoma, a malignant bone tumour in her left knee this past June, news the mom described as a “parent’s worst nightmare.”
“We are in a battle for her life,” she stated.
Beloved Toronto metal music fan dies after three hospital visits in 10 days
Food prices set to rise another 5-7% in 2023 after record inflation year: report
“For us this is a road we know because we lost our oldest son in 2001 to a malignant brain tumour. So, to ever hear those words again.. that we could loose another child is just overwhelming,” Hachey said as her eyes swelled with tears.
She continued to say Jayce’s cancer diagnosis was delayed due to COVID, causing the pain in her knee to increase. The extended waiting period only added to the family’s stress.
But the Hacheys are now headed to Saskatoon, where they will be staying for 12 weeks of chemo treatment and then knee surgery. A costly stay which has prompted them to ask for help from the community by starting a GoFundMe page.
Hachey explained the family will need to spend quite a bit on hotels, along with other travel and living expenses.
Jayce’s treatment will take Hachey away from her job as a nurse. She adds, despite their financial concerns, the mom needs to be there next to her daughter in order to support her as much as she can during Jayce’s cancer battle.
“What they want to see in the tumour is that basically 90 per cent of it is dead and then we decide there whether it’ll be a limb sparing surgery or if Jayce loses her leg and after that its additional chemo,” Hachey said.
She said additional weeks of chemo will be needed after the knee surgery due to the fact that osteosarcoma is a type of cancer that can spread to the lungs and other bones in the body.
Jayce’s doctors say she has a 70 per cent chance of fighting the cancer, odds that are helping the family stay optimistic.