By Bhavana Gopinath –
Many Kitchissippi Times readers are already familiar with the heartbreaking story of eight-year-old Kate Drury who died in November 2015, of complications from a rare mitochondrial disease. This disease is called SIFD – an acronym for Sideroblastic anemia, Immune deficiency, periodic Fever, and Developmental Delay. It is so rare that Kate was the first child to be diagnosed.
Local writer, photographer and publisher Amanda Sage has known Julie Drury, Kate’s mother, for many years. She has watched Kate’s parents Julie and Brian suffer with their child’s illnesses, and seen Kate’s brother, Jack, tend to her unconditionally. As the little girl battled one medical setback after another, Amanda was struck by Kate’s inner strength and resilience. Kate never wavered in her cheerfulness, or in her determination to live life to the fullest.
When Kate passed on, Amanda wrote a small story about her being in a better place, intending to give it to the family to help them cope with their grief. At the remembrance ceremony, Kate’s grandfather’s eulogy mirrored what she had written. She sensed that others, like her, had been touched and deeply moved by Kate.
Amanda realized that the story she’d written could take on a larger role — it could pay tribute to Kate, spread awareness, and raise funds.
Through their ordeal, Kate’s family was painfully aware that research into mitochondrial disease needed more funds and wanted to contribute in Kate’s memory. (Julie, a dedicated runner, along with family and friends, raised more than $50,000 during the Ottawa Race Weekend. The monies went to CHEO for research into SIFD and mitochondrial disease).
With the family’s complete support and cooperation, Amanda fleshed out her thoughts about Kate into a children’s book, Now That I’m Here. Julie and Brian shared their memories about Kate and her love of pink and purple, and heart-shaped stickers. Even Jack (who had donated bone marrow to Kate) contributed to the book.
Now That I’m Here is a beautiful book written in Kate’s perspective, that captures her strength and cheer. Amanda says, “I wanted to give Kate a voice, an opportunity to live the way she couldn’t.”
Amanda’s book has received glowing endorsements for the way that it deals with illness and death, and is yet uplifting for young readers. Amanda hopes that Kate’s story will help other families and children cope with serious illness and death.
Now That I’m Here is being released September 18 for Global Mitochondrial Disease Awareness Week. It will be available as print-on-demand, in both English and French, for $24.99 plus taxes and shipping. All profits go to CHEO towards mitochondrial disease research.
Kate’s loss will always be a wound in her family’s souls. But for Julie, Brian and Jack, there is some comfort that because of Kate, perhaps some other patient’s life can be saved. Kate’s memory will always be cherished by her family; Now That I’m Here ensures that we will all remember her.
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