Elmira teen aims high in fundraiser for Make-A-Wish

Hav­ing ben­e­fit­ted from the foun­da­tion’s work, Am­ber Owen Hughes to rap­pel down high­rise

The Woolwich Observer - - NEWS - VERON­ICA REINER

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 chari- ties 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.

Am­ber Owens Hughes sports her Rope for Hope t-shirt at the park on Killdeer Road. She will be par­tic­i­pat­ing in the event for the sec­ond time on June 15 in Lon­don, On­tario in sup­port of the Make-A-Wish foun­da­tion.

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