2023-06-18 04:00:00
The father of an almost 12-year-old girl living with a rare genetic disease builds a unique bond with her by taking her running once a week, summer and winter.
“It is one of the privileged moments with my daughter. She encourages me a lot and it breaks the isolation linked to her disability, which means that we don’t have time to play sports, ”says Olivier Ferrand.
Her eldest daughter, Alis Ferrand, will soon celebrate her twelfth birthday. A rare genetic anomaly compromises her daily autonomy and confines her to a wheelchair.
Never mind, her father started running with the stroller when she was three or four years old.
Since then, he has never stopped, even though his daughter has grown and is almost 1.50 meters tall. Almost every week, he takes him to Mount Royal for more than an hour of training.
In May, he even ran a 21 km 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 can have this bond through racing. Alis, she loves it. She has fun when he goes faster, ”underlines his companion, Aurélie Pouteau.
A busy daily life
The couple, who also have an almost 5-year-old daughter, had just arrived from France when Alis was born twelve years ago.
It wasn’t until six months later that they noticed the developmental delays and eight years later that a genetic test identified the abnormality.
Their daughter’s disability has disrupted their daily lives.
Mme Pouteau stopped working for two years, the time to find a CPE who would offer Alis the assistance she needs.
“As Alis gets older, there are more and more new diagnoses. She had to have an operation because she started eating less. She has epilepsy, so it’s daily stress. It takes a break,” she explains.
Such a burden can lead to a certain isolation for the parents of children living with a disability that the race helps to combat, according to his spouse.
“We have a lot of goodwill from the people we meet, who run, who play sports. People smile at us, encourage us. Alis, 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 a parent of a disabled child, already an “everyday hero”.
“It’s a big mourning when we realize that our child does not speak, does not walk, does not eat and that he will be dependent on us all his life”, insists Nathalie Richard, herself mother of David, a 16-year-old teenager suffering from cerebral palsy and intellectual disability.
For her, the simple act of running starts conversations and de-stigmatizes her child’s disability, one kilometer at a time.
“Just participating in normal life and meeting people who realize that we are part of life, it helps to understand. […] Running allows people to ask questions in a different setting, between runners,” she says.
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