My daughter Lily was 7 years old when she was diagnosed with kidney disease. She had suffered from migraines and started to have swelling around her eyes. Lily saw six different healthcare professionals before they figured out what was wrong. She didn’t present with typical symptoms. A biopsy confirmed she had Focal Segmental Glomerulosclerosis (FSGS), and Lily had a kidney transplant. She is now post-transplant and living with recurrent FSGS.

Lily’s life has completely changed. She can’t go to school and does virtual learning. She isn’t allowed to swim or do gymnastics or play on the trampoline. Because she is immunosuppressed, we can’t have anyone in our house who doesn’t live here. We already had a lot of restrictions before the Covid-19 pandemic, and now there are a hundred times more rules. I feel like all we do as parents is say ‘no’.

When Lily got sick, I started to access peer support groups for FSGS in the United States and found them very helpful. Lily attended some, too. When I heard about the new peer support group starting in Ontario, I thought it was a great idea. I will be one of the group’s two facilitators, when the meetings begin in January.

I have seen first-hand how helpful peer support is for me and my family. The sessions are very informative and I have learned an incredible amount. These groups can provide peace of mind, hope, a sense of community and friendship. They also help lessen feelings of isolation.