The father of a nearly 12-year-old girl with a rare genetic disease forms a unique bond with her by running once a week, summer and winter.
“It’s one of the most blessed moments with my daughter. She inspires me a lot and it breaks the isolation linked to her disability, which means we don’t have time to play sports,” says Olivier Ferrand.
His eldest daughter Alice Ferrand will soon celebrate her twelfth birthday. A rare genetic anomaly compromises her daily autonomy and confines her to a wheelchair.
No matter, her father started running with a pram when she was three or four years old.
Since then, he has not stopped, even though his daughter has grown and is almost 1.50 meters tall. Almost every week, he takes him to Mount Royal for over an hour of training.
In May, she ran a 21km half marathon to raise funds for L’Étoile de Pacho, a support network for parents of disabled children.
“I think it’s great that they have this bond through racing. Alice, she loves it. She’s funny when he goes fast,” her companion Aurelie Boute underlines.
Photo by Aurélie Pouteau
Busy everyday life
The couple, who also have a nearly 5-year-old daughter, came from France twelve years ago when Alice was born.
They noticed developmental delays only after six months and after eight years a genetic test identified the abnormality.
Their daughter’s disability has affected their daily life.
Mme Pouteau stopped working for two years, and it was time to find a CPE that would provide Alice with the help she needed.
“As Alice gets older, there are more and more new diagnoses. She had to have surgery because she started eating less. She has epilepsy, so the daily stress. It takes a break,” he explains.
Such a burden can lead to a certain isolation for parents of disabled children, which, according to his wife, helps the race to fight back.
“We have a lot of goodwill from people we meet, runners and sportsmen. People smile at us and encourage us. Alice, she makes her laugh,” he says.
Everyday heroes
For the founder and director of the support network L’Étoile de Pacho, Nathalie Richard, this is a “heroic gesture” for the parents of a disabled child, already an “everyday hero”.
“When we realize that our child won’t talk, won’t walk, won’t eat and will be dependent on us for the rest of his life, it’s a great sadness,” insists Natalie Richard, mother of 16-year-old David. A young woman with cerebral palsy and intellectual disability.
For her, the simple act of running starts conversations and removes her child’s disability one kilometer at a time.
“Participating in ordinary life and meeting people who feel that we are a part of life helps us understand. […] “Running allows people to ask questions in a different setting between runners,” he says.
