Cystic Fibrosis Canada is hosting three treks to Machu Picchu this May to raising funds and awareness in the fight to find a cure for CF.
But Madi Vanstone, a young cystic-fibrosis warrior and advocate, and her mom Beth won’t be on any of the treks, despite earlier plans.
Beth explained that the chief medical officer for the Charity Challenge trek turned Madi down for the Walk to Make Cystic Fibrosis History.
“Despite letters from Madi’s doctor and the Sick Kids Cystic Fibrosis Clinic stating Madi was healthy to do the trek in Machu Picchu… his feeling was that the elevations would be unsafe – and should anything happen on the trail, the hospital is at an even higher elevation,” Vanstone explained.
“To say we were disappointed is an understatement.”
The mother-daughter team have been fundraising for the Peruvian adventure, not only to raise money for CF research, but to shine a light on the advances made in CF research. Through Madi’s efforts and advocacy, the Ontario government agreed to pay the costs of the drug Kalydeco, a new-generation treatment that “corrects” the G551D genetic mutation which causes CF in an estimated four per cent of cystic-fibrosis sufferers.
Madi is in that four per cent.
Kalydeco has made the difference between constant illness and frequent hospital visits, and a normal lifestyle for the teen, who lives in New Tecumseth but attended Sir William Osler Public School in Bradford West Gwillimbury.
Despite the disappointment of Peru, Madi and Beth have adjusted their plans.
While they won’t be making the trek to Machu Picchu, they have been approved for a five-day trek along the Great Wall of China this September.
“We have raised the money we need to get to China, and we have raised nearly $20,000 for CF Canada,” said Beth. “We are continuing to fundraise until we leave.”
She added, “This disease has taken so much from Madi and all who fight it. We won’t stop grabbing back what we can!”
Just a note: The CF Warrior Project: 65 Stories of Triumph against Cystic Fibrosis has now been published; Madi Vanstone is one of the 65 CF warriors profiled.
