Halloween home raising money for rare disease research after Winnipeg toddler diagnosed
A Transcona home is covered with Halloween decorations — everything from singing pumpkins, zombies and spider webs. But the decorations aren’t just to get people in the spirit of Halloween, they’re also raising the spirits of a Winnipeg girl.
One year ago Anna Siedler says her daughter Willow was the first person in Manitoba diagnosed with NGLY1 Deficiency — a rare genetic disorder.
The news came two weeks before Willow’s second birthday.
“It’s terrifying. It’s very scary to find something out like that,” Siedler said.
“Willow has missed milestones. She has difficulties at three-years-old to sit and stand. She doesn’t speak. She can make noises but she doesn’t understand how to speak to people. Feeding issues, seizures, there’s a lack of tears there’s a lot going on because it’s a very important gene. It sort of affects everything.”
Siedler said there are only four other people in the country who have been diagnosed. One of them lives in Calgary and the others are in Ontario. She says the need for more funding for research is crucial.
“Research isn’t free, when things are rare it’s harder to have that push. It comes down to you to advocate for your child,” she said.
Siedler got the idea this year to transform the family home into Willow’s Web and raise money for the disease.
“Having a child with a rare disease is scary and when you think of scary things you think of Halloween so I wanted to involve the two things together and make it fun. Something that’s scary isn’t as scary when you have other people involved.”
The family is raising funds for the Grace Science Foundation online, an organization working to find a cure for NGLY1 Deficiency.
The home is located at 1137 Devonshire Drive West in Transcona and will be showing the Halloween display until the end of the month.
WATCH: A Winnipeg family has decorated their house at 1137 Devonshire Drive West to raise money for the rare genetic disease that their three-year-old daughter has. Global’s Amber McGuckin reports.
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