Telling Kate’s story, and the story of our health care journey together. (KickAss Canadians event 2011)

I came across this article today about storytelling. It was inspiring and I wanted to share it with you and reflect on why I continue to share my story and Kate’s story.

I have been sharing the story of my journey as Kate’s mom, the evolution of her health journey, and our experiences as mother and daughter navigating an often challenging health care system since I started this blog several years ago.

I’ve shared with you triumphs, challenges, sadness, and joy. I’ve reflected on the ‘system’ and what works / doesn’t work in my humble opinion as a mom. I have been open and reflective. I have been raw and tragically honest. I have told the truth as we have lived it. It is our story.

Sharing our stories is incredibly important. I regularly encourage other families and patients that I speak with and mentor to share their story, the tale of their journey, the highs and lows, and what they have learned along the way. The stories resonate with others. The stories empower and encourage. Stories make the path more travelled and less lonely.

When I read your stories, I nod my head in agreement or understanding. Your stories make me cry when you share your heartache, or when you touch on a knowledge or experience that few others could possible understand. I feel empowered when you share your stories about challenges you have faced because I know I am not alone. Your stories lead and they mentor.

In sharing our story, I was looking for a way of connecting and sharing, but also creating. Sharing Kate’s story has helped us to connect to a community of SIFD families internationally. It has allowed us to celebrate Kate’s life. Our story has served as a guide for others on a rare disease and medically complex journey. Our story has helped educate those willing to engage and to listen.

I am proud of our story, and how I have shared it.


There is incredible power in storytelling. You can literally change someone’s life, change an opinion, change a system, change a person’s perspective. It doesn’t have to be as public as ours or written in a book, but I encourage you to share your story – with a friend, family member, or even with yourself in the form of journalling. It is incredibly powerful and it creates community.

This video was part of the story told by Rogers TV as Kate’s story was featured as part of Ottawa Race Weekend. Part of the community I built through story telling is our Team MitoCanada running community.



Your story is yours, no one else’s . No one has lived this experience but you. Your story is important.
I want to thank the incredible story tellers I have the privilege of knowing and connecting with over the past few years. They have amazing stories and have been courageous to share them. I encourage you to have a read through their journey. Their stories.

Donna Thompson

The incomparable DonnaThompson, who has become a mentor and friend. Wife of Jim, mother to Nicholas and Nathalie. An author, blogger, speaker, educator, writer (The Four Walls of My Freedom), actor, director, teacher…Wow. And a passionate story teller.

Jennifer Johannesen

Author of, No Ordinary Boy, Jennifer is a speaker, writer, and academic with a Masters of Science in Bioethics. She studies and comments on the intersection of the caregiver, the health provider and the health care system. She’s absolutely fascinating to read and to hear speak as she weaves in vignettes from her personal journey and story to share her knowledge and expertise.

Julie Keon

Julie is a LifeCycle Celebrant and Officiant, she is also a wife, and dedicated mother to Meredith. Julie tells her story in the book What I Would Tell You. A long time storyteller, Julie’s storytelling evolved from an essay written to a mom who Julie observed in a hospital waiting room one day. Julie continues to share her story and wisdom via her blog of the same name, and is an incredible mentor to the HIE community.

Christine Chambers

Wait, a researcher who uses storytelling to share her knowledge?! Yes, Christine has discovered how she can harness and use storytelling to better facilitate knowledge transfer. Dr.Chambers has had incredible success with #itdoesnthavetohurt and has engaged parents and caregivers to help her share research into pain management for children via their stories.

Sue Robins

A published writer, speaker, storytelling and mother. Sue has been a strong voice for patient and family centred care in BC and across Canada. One of the few to occupy a paid position as a patient advisor in a health care centre. Newly diagnosed with breast cancer, Sue is now telling her personal story of her journey. It is powerful and moving.

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