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Sawyer’s Story

It has been several months since our sweet Sawyer died. We still feel lost without her but feel that she keeps sending us signs and little messages as to what we should do next.

We had almost four years with Sawyer. At five months, her seizure and diagnosis journey began. It wasn’t until she was 18 months that she was diagnosed with DNM1 – a rare neurological condition resulting in catastrophic seizures in infancy and throughout her life. Sawyer was the first case in Canada and only the 22nd in the world. We are grateful to Dr. Dave Lysecki and the team at MacKids for giving Sawyer the best life possible.

When it was nearing Sawyer’s time, we were told by our medical team to get ready. We frantically moved back ‘home’ and created a hospice environment for Sawyer. During that time, family organized meal drop offs, we visited outside with family and loved ones because of COVID, we took family photos and we did crafts. Mostly we lived and loved.

When Sawyer passed away, she was in her own bed with Colin and I beside her and we were surrounded by family. If it wasn’t for our family and very generous and quiet donation organized by Colin’s employer, Sawyer would have died in a hospital bed without her family and loved ones.

Which is why a pediatric hospice is so important. Not everyone has the ‘army’ we have. We are so thankful that this will be changing for families in the future. The new pediatric hospice will allow other families to build memories and just love their child. On behalf of these families and in memory of our own Sawyer, we ask that you support children and families by helping build this very special place.

—Karlee and Colin Boyce