A Dad’s Reflection on Growing up and Gaining Ground with Juvenile Arthritis

A Dad’s Reflection on Growing up and Gaining Ground with Juvenile Arthritis

DAVID PORTE

It’s been 16 years since I helped found Cassie + Friends (cassieandfriends.ca) to transform the lives of the 24,000 children in Canada who suffer every day from Juvenile Arthritis (JA) and other painful childhood rheumatic diseases like Lupus.

My journey has been 16 years of watching my daughter, Cassie, endure medication after medication, thousands of injections, hundreds of medical appointments, lots and lots of tears and pain and many beautiful triumphs as she overcame challenge after challenge. And now, in the blink of an eye, she is no longer a toddler and is off to university in September.

It’s difficult to think about sending my daughter off into the big wide world on her own and even more difficult to know she will be finding her way while still doing two injections a week of Methotrexate (a low-dose form of chemotherapy that requires other medications to keep her from suffering severe nausea) and Tocilizumab (a biologic therapy that leaves her at increased risk for developing serious infections).

While other kids are adjusting to their new classes, she’ll also need to find a rheumatologist and an eye doctor for regular screenings, coordinate school accommodations due to pain, store medications and dispose of needles, manage nausea and fatigue...all of it on her own. This has made my drive to find a cure for all the kids living this way greater than ever.

At Cassie + Friends (C+F), we have the support and programs in place for kids like Cassie and are continuing to expand our national reach so that every affected child and family in Canada has the help they need. Paramount and timely for me is our newly announced $500,000+ commitment to address major gaps in mental health care for youth with rheumatic disease, including: a research partnership with Brain Canada; an innovative youth mentorship program powered by Jane.App; and a national working group of patients, parents and medical experts ready to take action together.

This investment and C+F’s leadership are desperately needed. Research shows that up to 40 per cent of children and youth with Juvenile Arthritis struggle physically and mentally with anxiety, panic disorder and depression. The constant pain, the pressures of adolescent and young adult life, the inability to keep up with their peers, and the always being ‘the one with the disease’ can drain these kids at a time in their life when they should be most vibrant and active.

Even though my daughter Cassie has now officially “graduated” from the warm and expert care of her pediatric rheumatology team at BC Children’s Hospital, she sadly won’t graduate from Juvenile Arthritis until there is a cure. That means C+F must keep going too. I invite new friends to join us in our mission by learning more and making a donation at cassieandfriends.ca

I also want to thank the following dedicated friends and partners for helping us to raise the profile of Juvenile Arthritis as a priority health issue for children in Canada: Westland Insurance, Nicola Wealth Management, Y.P. Heung Foundation, Yvette Porte, Keystone Environmental, Trillium Projects, BMO and many more.