|Rare blood disease and Lupus
Torrie of Balcarres, Saskatchewan received a shocking diagnosis of a rare blood disease at nine years of age. Thanks to recently purchased groundbreaking equipment called Pheresis, Torrie is alive today and able to say “thank you” to generous donors like you who helped save her life.
Two weeks before her diagnosis, Torrie noticed some unusual symptoms, but as she was at a dance competition at the time. The last thing on her mind was a trip to the hospital. Before she knew it, the young dance and cheerleading competitor was suffering from a sore throat, loss of appetite, and a mysterious rash. A hospital visit could no longer be ignored. Torrie was admitted with a low platelet count, and soon after had no platelet count at all. The provincial Pediatric Transport Team rushed to airlift her to Saskatoon’s Pediatric Intensive Care Unit (PICU).
“I cried a lot in the first days of her being in hospital as I didn’t know how to help her, and I had to put all our trust into the nurses and specialists,” said Torrie’s mom Darci, “As parents, its heart wrenching when your child needs to be put through so many tests and to not know what is wrong.”
It was a lot for little Torrie to take in. She could no longer compete in dance recitals and missed her friends at school. As tough as it was, Torrie kept her head held high and bravely faced the critical tests to determine what was wrong. She was soon diagnosed with Thrombotic Thrombocytopenic Purpura (TTP) Autoimmune Blood Disease, which can be fatal if not treated right away.
Purchased just in time – six months before her diagnosis to be exact – Torrie was the first child in Saskatchewan to be treated with the new Pheresis machine. Plasmapheresis can remove unwanted components from the blood, treating children with autoimmune disease, cancer, poisonings and overdose, severe infections and more. Without access to this life-saving equipment, children like Torrie would have to travel out of province for treatment. Tissue Plasma Exchange Therapy, performed by the Pheresis machine, is now considered an essential medical intervention in Saskatchewan’s PICU department. It was the perfect treatment for Torrie’s rare blood disease.
“TTP is characterized by clotting in the small blood vessels of the body, resulting in low platelet count. With fewer platelets available in the blood, Torrie may bleed underneath the skin and bleed longer than normal if cut or injured. It has impacted everyday life for us,” said Darci. “Torrie’s treatments involved high doses of medication to weaken her immune system, multiple doses of a chemotherapy type drug, and over 70 treatments with the Pheresis machine.”
Torrie’s story took another shocking turn in early 2020 when she was diagnosed with lupus, a chronic, autoimmune disease characterized by inflammation in one or more parts of the body.
Now every two to three months, Torrie visits Jim Pattison Children’s Hospital to see a pediatric hematologist and rheumatologist to help keep her health in check.
Learning to cope with two unexpected diseases has not been easy, so Torrie, now 14-years-old, regularly visits a counsellor to help her stay positive and hopeful for the future. Torrie is set on not allowing her disease to take away her quality of life and is doing her best to live it to the fullest.
“Today Torrie is doing great and loves bike riding, swimming, doing crafts, dancing, music, and hanging out with her friends,” said Darci. “With her disease, we take each day as it comes.”