The 17-year-old Cystic Fibrosis (CF) warrior from Bond Head, Madi Vanstone is back from her trek to China and says it was a fabulous trip.
Madi and her mother, Beth Vanstone, were originally supposed to travel to Machu Piccchu, Peru in May, but due to concerns over the altitudes and her condition, the trip was cancelled by CF Canada.
Instead of letting it get them down, the Vanstones decided to plan another trip, while continuing to raise funds for CF Canada. They teamed up with United Kingdom based organization, Charity Challenge to climb the Great Wall of China in September.
“It was incredible!” exclaimed Beth.
“The toughest thing we have ever done, and especially for Madi living with Cystic Fibrosis,” she said.
The mother-daughter team flew out on Sept. 5 and stayed for a total of 12 days.
For five days, they trekked for six to eight hours per day, travelling on a different part of the wall for about one and a half hours a day to a new spot.
“Some of the wall was crumbling and untouched other spots were refurbed and there was a day we hiked a lot of the day beside the wall as it was in such poor repair. It was beautiful, it was tough and it was empowering,” described Beth.
Madi says it was one of the toughest things she has ever done, but also one of the most rewarding.
In total, they were able to raise over $28,000 for CF Canada through fundraising for the trip.
“Hopefully one day CF will stand for cure found,” said Beth.
Madi says hopes one day there will be a cure for CF and all CF patients will be able to trek the Great Wall.
”It is important for Canadians to know that treatments are available to improve the health of CF patients and that our government needs to work harder to ensure these medications get to the patients that need them,” she said.
Madi has been on the drug Kalydeco since she was 12-years-old, which she says has helped her tremendously.
The drug is very expensive, and through her efforts of visiting Queen’s Park and speaking to former premier, Kathleen Wynne and former health minister, Deb Matthews, she was able to get the drug covered under OHIP.
With the new pharmacare proposal, the Vanstones are worried about access to orphan drugs like Kalydeco and continue to advocate and raise awareness about life saving medication for Canadian patients.
