I want to let you know why I am walking this Charity Challenge for Cassie and Friends.
“Autoimmunity is the system of immune responses of an organism against its own healthy cells and tissues. Any disease that results from such an aberrant immune response is termed an ‘autoimmune disease.’”
My dad’s cousin Gladys Marie Derksen was born in April of 1954 to Andrew and Frieda (nee Neufeld) Derksen. She was diagnosed with inherited rheumatoid arthritis in 1958 at the age of 4 and passed away in November of 1963 at the tender age of 9 from her disease.
Praise the Lord this is not my daughter’s story. Joelle was also diagnosed with an autoimmune disease at the tender age of 4. Joelle will be turning 8 this year and is healthy and vibrant.
Joelle was diagnosed with an incredibly rare form of autoimmune disease called Juvenile Dermatomysotis (JDM). It turned our world upside down. Her diagnostic journey started at the age of 2 with simple inquires about fatigue issues, rashes, hair growth etc.. It was not until December 2014 (just after her 4th birthday) when our family doctor sent us to an amazing dermatologist at BC Children’s Hospital. We were referred that same day to Rheumatology because of a suspected autoimmune disease. Specific blood work and an MRI confirmed their suspicion.
My husband and I have realized that it was and is the knowledge and comprehension of the doctors in our path that has been the saving grace for our daughter. It started with a wise general practitioner who kept listening to and fighting for us. Joelle could have lost muscle fibers in her legs and arms if the disease was not discovered on time. The damage could have also moved to her lungs and heart. Her face, fingers, knees and elbows could have scarring and infected wounds from the disease. The doctors, in many ways, have saved her life. 55 years later, from the passing of Gladys, we have children being treated with life-saving measures!
My friend Trina has suffered with Juvenile Mixed Connective Tissue Disease from as early as her family can remember. However, because 35 years ago the idea of arthritis in children was not understood, she was told she was depressed and that there was no underlying cause to her pain and fatigue other then mental health. When she was finally diagnosed at the age of 13 her knees, feet, and legs were all permanently damaged. I want this to never happen to a child again. But it does. I want ALL doctors to know how to diagnosis children with an autoimmune disease at the earliest stage possible before lifelong damage is done to their young bodies.
I run for my daughters Joelle 7 and Nadine 3 (who is still under investigation), Annelise age 2, Jessa age 5, Kenzie age 7, Hope age 6 and Hannah age 17 who are in my life and live with some form Juvenile Idiopathic Arthritis or JDM. Thank you Cassie and Friends for all you do for our kids.
Submitted by Marie Haak, a parent and Cassie and Friends community member in Abbotsford. To join Marie, her daughter Joelle and her son Conrad on June 24th for the Scotiabank Charity Challenge Run/Walk, click here. To sponsor Marie and support Cassie and Friends Society, visit her fundraising page.
