#KidsCantWait: Levi’s + Tallon’s Journeys

My name is Grace Todd and I have two sons both with different forms of Juvenile Idiopathic Arthritis (JIA). My youngest Levi just turned 7, and my oldest Tallon is 10. I live in Whitehorse YT and have been fighting for them for almost a year before we got diagnosed. Many doctors dismissed us with reactive arthritis, growing pains, or “too complex” for their capabilities up north. We got referred to BC Children’s Rheumatology with a 3-month wait before we were seen. We flew to Vancouver and met with our awesome team. Originally my youngest was diagnosed with enthesitis-related arthritis (ERA) and my oldest psoriatic arthritis, but after returning to Whitehorse and medications not improving, 3 months later we returned to BC Children’s and my youngest was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA), and my oldest was diagnosed with polyarticular arthritis, which means he has more than 5 joints affected. If my children weren’t First Nations people with Status and covered through the Non-Insured Health Benefits Program for First Nations and Inuit (NIHB), I would struggle. NIHB pays for our flights and hotels every 3 months to go to Vancouver and the high cost of their medications.

They are extremely active boys, they race dirt bikes, compete in jujitsu, and snowmobile, but some days they are in too much pain to do their favourite activities. Some days are easy for them and on others it’s very hard to be mobile. It took many months for us to find physiotherapists and occupational therapists up north for them. My youngest takes Methotrexate weekly and my oldest takes a biological medicine called Amgevita biweekly.

I was originally overwhelmed by the thought of injections and Cassie + Friends sent an injection care package and it’s been helpful. My oldest who’s 10 now does his injections by himself while I supervise. They are so brave to have bloodwork so often and so many appointments. There are many ups and downs but with the support of Cassie + Friends it’s been a learning journey for all of us. I hope this summer I can afford to bring them to the Cassie + Friends Vancouver meet-up so they can meet other kids with JIA and not feel so alone.