She’ll be at the eighth tallest building in the region on May 12 for Rope for Hope – an annual fundraising campaign for Make-A-Wish Canada, which grants wishes for children with life-threatening medical conditions, providing dream trips and life experiences. They have granted 6,864 wishes so far.
For Hughes, the cause is personal.
In 2015, Hughes was the recipient of her own wish from the foundation, taking a family trip to Hollywood. It was the perfect trip for Hughes – she is passionate about filmmaking. The trip gave Hughes and her family hope and a holiday.
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“We stayed at the West Hollywood Hotel, and the lobby looked like it was on Home Alone. It was so pretty. Everything in the room was film themed,” she described.
Now she wants to help other kids experience the same feeling. She is already halfway to her $1,500 fundraising goal.
“It made me realize that everything isn’t as bad as it may seem. On your worst days, you can look back on those memories and say, ‘I want to go there again,’ and I was so healthy that week, and it felt so good being near the water at Santa Monica Pier,” she said.“It is just a reminder that things aren’t so bad.The foundation helps a lot with kids and teens who are sick. It gives them hope and lifts their spirits. On those days that you feel really discouraged and not feeling well, tomorrow can be a better day.”
Hughes’ mother, Joan, says the foundation also provides a special kind of support for families with children who are terminally ill.
“It is a nice time to enjoy your family if that is the last moments you have together if something should happen,” she said.
Hughes was diagnosed with primary ciliary dyskinesia, a genetic lung disease that prevents the cilia in her respiratory tracts from moving. It makes her prone to respiratory illnesses. Those with primary ciliary dyskinesia generally need lung transplants by the time they are 30. She was born with pneumonia and a blackened lung, but it took 11 years for the doctors to catch it. Nowadays, she is doing better, but still has some bad days.
“I am alright, but I miss a lot of school from being sick, and it is kind of hard to keep up by I am managing,” she said. “All the dust, bacteria and mucus and stuff gets trapped in my body, so they use machines or cough to get it out. It is like having a really bad chest cold, but all the time.”
Working through a lifetime of debilitating illness, the Make-A-Wish foundation really helped Hughes, and next week, she will be giving back in a way that reaches new heights.
“It is pretty exciting,” she said. “I am kind of nervous, but I feel like it would be a lot of fun. I like those rides at the amusement park that start high and go down. I just thought it would be a really fun way to raise money to give back to Make-A-Wish.”
Joan is a bit nervous about the event, and says she is hoping that the wind stays down on May 12.
“I looked at the building the other day and I thought, ‘that is a big, big building,’” she laughed.
To help Amber reach her $1,500 goal, visit makeawishca.donordrive.com to donate.
