BEACONSFIELD – As Amanda Zarifah and her husband, Stephen Loughheed, read to their 6-month-old daughter, Zoe, their first born daughter, Lauren, weighed heavy on their minds.
“At about eight months, she started to slow down a bit,” said Loughheed.
“She was diagnosed with a disease called Krabbe leukodystrophy and given a prognosis of 13 months to a year and a half.”
The rare illness destroys the protective coating in the brain and throughout the nervous system.
In most cases, symptoms of the disorder develop in babies around six months and usually results in death before the age of two.
Lauren lived until she was just over four-years-old.
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“After the initial diagnosis, we kind of lived in the minute, in the moment,” said Zarifah.
“We didn’t think too much about the future or too much about the past because it was too painful and I think that helped us get through it.”
WATCH: Extended interview about Lauren and the campaign
As the family begins a new year without Lauren, they wanted to begin with a celebration.
Jan. 8, would have been Lauren’s fifth birthday, so the family decided to honour the day in a special way.
“People did a lot of nice acts of kindness for us and supported us throughout the journey,” said Loughheed.
“We thought it would be nice to have a campaign where people did those acts of kindness and those nice things to other people in the community.”
How to get involved
The Random Act of Kindness campaign can include anything from baking goodies for a friend or leaving compliments for a colleague.
The parents are asking the public to take a photo of any kind acts and share it on social media using #lifewithlolRAK.
They said the campaign is just another way to pay tribute to Lauren.
“I’ll miss her the rest of my life,” said Zarifah.
“We miss her a lot.”
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