WINNIPEG -- Head on over to Transcona, step up to Platform 9 and 3/4, and you'll see a ‘Harry Potter’ themed Halloween house.
"I am admittedly a ‘Harry Potter’ fan," said Anna Siedler. "That's where I geek out."
Part of the reason is that the movie series where magic is real, speaks to the hope she has that a little magic will come into her own life.
Siedler's four-year-old daughter Willow is living with a genetic disorder known as NGLY1 deficiency.
"That's a gene that your body needs to remove sugars from proteins in order to do anything internally," said Siedler. "It causes developmental delays and basically affects everything in her body."
It's a very rare illness. Siedler said fewer than 100 people worldwide have been diagnosed with the disorder. According to Dr. Grant Pierce from St. Boniface Hospital, that makes it that much harder to find treatments or a cure.
"It's resources," said Dr. Pierce. "Where do you put your resources? And how many people can you affect with the research you do?"
But small numbers of people living with an illness doesn't mean research won't happen. Dr. Pierce said governments will sometimes fund research, and other times hospitals, like St. Boniface, will.
"A donor can come in with a donation to a rare disease, and that will focus researchers to work on that," said Dr. Pierce.
This is the path Siedler and her family have chosen. They've set up a donation box outside their Devonshire Drive West home, and they also have a fundraising page called Willow's Web.
"It's just a matter of, do we have enough funding to get there quickly?" said Siedler. "Or how long is it going to take?
Siedler hopes it won't take too long, and like in the ‘Harry Potter’ movies, help will be there when it's needed.
