Elmira’s Amber Owens Hughes does not let her serious illness get in the way of giving back to the community and living her best life possible. The 18-year-old Humber College film student will be participating in Rope for Hope for the Make-A-Wish foundation on June 15 in London, Ontario for the second time.
“She had a Make-A-Wish a few years back, and wanted to give back where she could,” said her mother, Joan Owens Hughes on her motivation behind participating. “So that’s why she would like to do it again. She has a rare condition that’s very similar to cystic fibrosis.”
Amber has primary ciliary dyskinesia, a condition that defects the action of the cilia lining in the respiratory tract. She was diagnosed with it when she was just 11-years-old.
“It’s significantly hard for her to clear her airways,” explained her mother. “So she gets very congested. Any infections or anything like that, it goes right to her lungs. She ends up getting pneumonia a lot. She will get quite sick, and she ends up on IVs or ends up in the hospital. The one year, she missed 56 days of school. Those sort of things happen.”
But she refuses to let the rare syndrome consume her life. Amber has contributed to multiple charities in the past.
Each year she’s done something, for either Sick Kids or Make-A-Wish. She’s done various events for charities. For a while, she did bracelet-making, and she would charge $2 for a bracelet. She did that for a number of years, and did that for different charities, and raised a lot of money.
Amber is also currently studying media foundations at Humber College.
“Well, I’d probably want to be a screenwriter or director,” said Amber of her future goals. “Something along those lines.”
“I was stunned at how she managed,” said Joan Owens Hughes. “Because she needs so much work on her lungs, and she’s here out doing films at two in the morning. Because that’s the time security let them on. She needs sleep, needs this, needs that. And still finds time to do her work.”
She also helps with the research portion at Sick Kids Hospital.
“They’re trying to find new medications to help them cope better,” said Joan. “They do have one new medication out that is in trial right now. Nobody knows if it really will work or help, but they’re only using it right now on certain trial patients.”
Both mother and daughter are truly excited about the event.
“She’s dyed her hair blue as well for the event,” said Joan Owens Hughes. “Because Make-A-Wish is blue, so she dyed her hair blue.”
“It’s really fun, I did it last year and it was such a cool experience and a really great way to raise money,” said Amber. “So I just thought I’d do it again.”
Those who participate in Rope for Hope raise pledges in exchange for a unique opportunity to rappel down a high-profile building. In this case, it is the London City Centre. All of the proceeds from the event go towards granting the wishes of children with life-threatening medical conditions. Amber’s fundraising goal is to raise $1,500.
For more information on the charity or the event, visit www.makeawish.ca.