1 minute read
Kristin’s Story
families. “This is a safe, confidential outlet where caregivers can connect with others going through similar experiences and not feel judged.”
For Sara, the peer support sessions offer an opportunity to bounce around ideas with other parents and learn from each other. “While everyone lives their own journey, we share a special connection. We can help each other navigate through this.”
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To learn more or to join the Pediatric Parents and Caregivers Support Group in January till June 2022, please email ontario.programs@kidney.ca. Dates are as follows (all times are 6:30 - 8:00pm):
Pediatric Caregivers Thursday January 13, 2022 Thursday February 10, 2022 Thursday March 10, 2022 Thursday April 14, 2022 Thursday May 12, 2022 Thursday June 9, 2022
Accessing peer support can bring hope, lessen isolation
as told to Heidi Westfield
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.
t Kristin and her brother, Foster
