Kate Drury's 'incredible light' extinguished by mitochondrial disease

Julie Drurysays her daughter Kate, who died last week, touched people in Ottawa and beyond with herinspirational battle against a form of mitochondrial disease so rare only a handful of people in the world have been diagnosed.

The little girlspent 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," Drurytold 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 rareformofmitochondrialdisease. 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 confirmedshe 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 Druryhas 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 Druryfamily Kate, Julie, as well as Kate'sfather, 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-Justinehospital 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."

Sideroblasticanemia immune deficiency, Kate's form of mitochondrial disease, is so rareDrury saidfewer 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 celebrationof Kate's life is set for Dec. 13, 2015, at the Ukrainian Banquet Hallin Ottawa'sWestboro neighbourhood, and everyone who has been touched by her life is welcome to attend.