For an Esquimalt family, the holiday season is filled with lots of happiness and grief. The Townsin family has been keeping their late daughter’s memory alive by trying to find a cure for the rare disease that took her life back in 2019.
Their three-year-old daughter, Lexi, had her life cut short when she was diagnosed with a rare disease called Blau Syndrome.
Lexi, at the time, was one of fewer than 200 patients in the world diagnosed with Blau Syndrome. It is a painful condition that affects joints, eyes, and internal organs.
- Victoria dad and daughter’s pitch to make documentary about her rare and life-threatening condition in running for $50,000 in funding
- Local dad and daughter looking for votes to cure rare disease
Lexi’s mother, Cheryl-Lynn, says that the later months of the year are the hardest times for her and the family.
“The anniversary of Lexi’s passing was October and these are hard months between October and her birthday in December,” she said. “We were thinking this year that rather than focus on our tragic loss, we would focus on her ongoing presence.”
“We’re going to try and put more love into the world and have it in Lexi’s name cause even though Lexi isn’t with us anymore we are trying to spread love,” said Felix.
She added that they are loving the support so far and they are hoping to reach over 1,000 people by Lexi’s birthday anniversary on Dec. 16.