Julie Drury says her daughter Kate, who died last week, touched people in Ottawa and beyond with her inspirational battle against a form of mitochondrial disease — so rare only a handful of people in the world have been diagnosed.
The little girl spent most of her eight years in and out of the Children's Hospital of Eastern Ontario, but as Julie Drury told CBC radio's Ottawa Morning on Tuesday, she "packed a lot of living into [it]."
"Our hearts are broken," Drury told friends and family the morning after Kate's death.
"She was, and always will be an incredible light in this world where she has touched so many with her smiles and spirit."
From the time she was an infant, Kate Drury suffered from a rare form of mitochondrial disease. The mitochondria in her cells failed to properly convert food and oxygen into the energy her body needed.
Drury said that by the time her daughter's diagnosis was confirmed she had already suffered through several years of hearing loss, delayed development and episodes of intense "cyclical vomiting."
'Fight like a girl'
"Her story's important," said Drury, who wants mitochondrial disease to be better known.
Since 2012, Julie Drury has kept a blog of her experiences to educate people and to connect with other families with children who have rare diseases.
'I wanted to put a spotlight on this disease. I wanted to find people like us; people going through a journey like us.' - Julie Drury, Kate's mother
"I wanted to put a spotlight on this disease," she said. "I wanted to find people like us; people going through a journey like us."
Through that process the Drury family — Kate, Julie, as well as Kate's father, Brian, and her older brother, Jack — found a mantra: "fight like a girl."
Drury said Kate always put up a fight and stayed positive.
"We say in our home that everyone was her favourite person. She made everyone feel like they were the most important person to her," said Julie Drury.
At the age of two, Kate's illness had stolen her hearing but she was fitted with a cochlear implant. Later, her older brother Jack gave her a bone marrow transplant.
A celebration of Kate's life
Rachel Platten's Fight Song, said Drury, was Kate's unofficial anthem and when her daughter was sent home from Montreal's Sainte-Justine hospital at the end of November, it became a final comfort.
"At the moment of Kate's passing, we spontaneously played it for her on the iPhone, laid it next to the pillow."
Sideroblastic anemia immune deficiency, Kate's form of mitochondrial disease, is so rare Drury said fewer than 10 cases have been documented in the past 20 years.
She said the CHEO doctors who looked after Kate for so many years are still searching for a treatment and perhaps a cure for her disease.
On Nov. 30, 2015, Drury said Kate died after a recurrence of her graft versus host disease — when transplanted cells attack the recipient's body.
Drury says a celebration of Kate's life is set for Dec. 13, 2015, at the Ukrainian Banquet Hall in Ottawa's Westboro neighbourhood, and everyone who has been touched by her life is welcome to attend.