I don’t know if there can be a ‘typical’ journey for a young child who receives a Juvenile Arthritis diagnosis. But this is Linden’s story so far.
When Linden got sick at 18 months old, we thought it was just a cold. But then came an unusual rash and his walking deteriorated. We visited our family doctor many times but our concerns were dismissed. We were told he was still learning to walk, or maybe I should change my laundry detergent. Then, just before he turned two, Linden’s ankles became warm and swollen and he stopped walking completely.
We were referred to B.C. Children’s Hospital and received his Juvenile Arthritis diagnosis. We were in shock. Kids get arthritis? How? Now what?
Since then, we have dealt with the ups and downs of an unpredictable disease. During Linden’s first month of Kindergarten he had a crippling flare and was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA).
As parents, we adjusted our hopes for his schooling. We just wanted him to make one or two good friends and to be happy.
Through it all Linden has been a champ. He has dealt with joint injections, years of nasty medications, and most recently, seventeen months of biologic infusions. We have shared moments of triumph and defeat. Currently, Linden is exceeding our expectations. The friends who run around the playground with him have no idea what he has gone through.
I have no idea what the rest of Linden’s journey will look like, but for now, we are celebrating his remission. We are deeply grateful for the wonderful staff at B.C. Children’s Hospital, the B.C. Children’s Hospital Fund and the support of Cassie + Friends who have made this possible.
Monday February 28th, 2022, is Rare Disease Day. An annual day to recognize the 300 million people worldwide living with rare diseases. A disease is considered rare when it effects less than 1 out of 2000 people (rarediseaseday.org). To learn more about Rare Disease Day and how to get involved, visit RareDiseaseday.org or watch their annual Rare Disease Day video.
