13-year-old with rare blood disease named Champion Child
At nine years old, Torrie Schaffer began feeling unwell and noticed she was bruising easily.
She was admitted to a Regina hospital with a low platelet count. It didn’t take long before she had no platelets at all, and she was hurriedly airlifted to the Pediatric Intensive Care Unit (PICU) in Saskatoon, where she spent 82 days in hospital.
Schaffer, who is from Balcarres, was soon diagnosed with Thrombotic Thrombocytopenic Purpura (TTP) Autoimmune Blood Disease — a rare blood disease where blood clots form in small blood vessels throughout the body, blocking the oxygen flow and lowering platelet counts.
“I was scared because I didn’t know what was happening,” said Schaffer.
The sudden turn in Schaffer’s health was also difficult on her parents and her brother, who was only 18 months old at the time.
“It was very tough because we didn’t know whether we were coming back ... with two kids or just one. It was really hard to know what was actually going on with her,” said Darci Skjerven, Schaffer’s mother.
A year later, the disease flared up and Schaffer found herself back in the hospital for another 47 days. While she has not experienced another flare up since, she still has to get blood work done once a month and travel to Saskatoon to see a specialist every two or three months.
Through it all, Schaffer has remained strong.
“She has been a true fighter and she hasn’t let it get her down,” said Skjerven.
Schaffer’s fighting spirit was recognized on Friday — her 13th birthday — when she was announced as the Jim Pattison Children’s Hospital Foundation’s 2020 Champion Child. Each year the foundation chooses a child who has overcome major medical struggles to be a representative of all sick and injured children in Saskatchewan.
In this role, Schaffer will travel across the province and North America as part of the Children’s Miracle Network Champions Program, sharing her journey with others and meeting with other Champion Children in Florida in the spring.
Schaffer hopes to raise more awareness of her disease as the Champion Child.
“It’s a rare blood disease, so no one really knows about it, so I want to raise more awareness about it,” she said.
Because of her hospital experiences, Schaffer now wants to be a PICU nurse when she grows up.
“She looks up to the PICU nurses up in Saskatoon,” said Skjerven. “One of her favourite nurses is a PICU nurse and she calls her her second mom, so that’s amazing.”