In Pictures: Halloween home raises funds for rare disease research
A Transcona home is decked out in spooky decor to raise money for rare disease (Jamie Dowsett, CTV News)
Winnipeg -
Halloween at Hogwarts.
That's the theme of a Transcona home completely decked out for the spooky October night, but it's also a fundraiser for Willow, a girl who lives there and has a rare genetic disease.
A Transcona home is decked out in spooky decor to raise money for rare disease (Jamie Dowsett, CTV News)
The display was started four or five years ago to raise awareness and money for research on NGLY1 Deficiency.
The disease can affect a person’s mobility, development and speech.
A Transcona home is decked out in spooky decor to raise money for rare disease (Jamie Dowsett, CTV News)
“NGLY1 patients are kind of like snowflakes. They all have the same condition but they are all different in their own ways,” said Jason Howard, Willow’s father.
“This is a way for us to raise money to hopefully find a potential cure for her.”
A Transcona home is decked out in spooky decor to raise money for rare disease (Jamie Dowsett, CTV News)
All funds raised go to an American research centre in Stanford that does research for Willow.
“That’s all we want for her. To have a normal life because she is my princess. You know there’s no one that squeezes my heart like she does type thing so yeah, it’s all about her,” said Howard.
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