Beth Vanstone and her daughter, Madi, have been training hard for next year’s 40K Trek to Macchu Pichu in Peru, to make Cystic Fibrosis history.
They will be among the 30 participants heading to the Andes in May of 2019, raising funds for CF research and awareness of the genetic disease that reduces both lung function and the ability of the digestive tract to absorb nutrients.
The disease impacts an estimated 4,200 Canadians - including Madi.
For the first years of her life, Madi was in and out of hospital, missing school and many of the activities she enjoyed. It would have been impossible for her to even contemplate a trek in the high Andes, let alone a 40-kilometre hike. She was in an almost daily fight for breath and life.
Kalydeco, a drug developed by Vertex Chemicals, corrects for the genetic mutation that produces CF in Madi and three to four percent of sufferers.
It’s not a cure but a treatment, and has given Madi a new lease on life. It has restored her lung function, making next year’s trek possible.
However, it was also a fight to get the Ontario government to add the drug to the list of medications covered by OHIP.
Madi and her supporters were successful, but the fight isn’t over. She continues to be an ambassador for CF and other rare diseases, successfully advocating for early screening for CF in newborns, and now for the inclusion of other new drugs on the roster of approved medications.
Her mom calls her a “warrior.” She will need all of that strength to make next year’s trek.
Not only have Madi and Beth been training hard, they have also been fundraising just as hard.
They need to raise about $4,200 each to take part in the trip, plus money to cover other expenses.
And just as friends, neighbours and her community came together to help cover the cost of medication not covered by private insurance, in those days before the Ontario government relented, the community is answering their call for support.
“Our fabulous neighbours in Newton Robinson held a fabulous ‘Summerlicious’ evening with gourmet hot dogs, loads of sides and treats,” said Beth. “They also had some great prizes they raffled off to help us out.”
And Nancy Young, owner of Nancy’s Nifty Nook, is holding a fundraising draw, with the proceeds going to Beth and Madi.
Shoppers receive a ballot for every $2 donation, three for $5, to win a child’s chair built by Bill Bishop, a pool toy, four passes to Silvercity cinema in Newmarket, and treats from the Nook. The draw will take place at the end of September.
“I’ve known Madi since she was a little girl,” said Young, through attendance at Bond Head United Church. “She looked so ill… Now, she’s grown into a beautiful young lady. And a warrior!”
Beth and Madi Vanstone plan to be at the Bradford Farmers’ Market for the Butter Tart Festival on Sept.15, raising funds through the sale of “Just Breathe” hats and jewellery.
“Just Breathe” has become Madi’s slogan, a reference not only to the mucus that fills the lungs of Cystic Fibrosis sufferers, making breathing a challenge, but also a comment on life itself.
The Vanstones created a line of ball caps with ‘Just Breathe’ embroidered on the front, and the number 65 on the back; “65 Roses” is how kids have pronounced the difficult disease ‘Cystic fibrosis’, and it is now a registered trademark of the CF Foundation.
Beth and Madi also have matching “Just Breathe” tattoos, signifying how they approach each day.
To contribute to the fundraising campaign, drop by the farmers’ market on Sept. 15, or follow the links:
Sponsor me on my Walk to Make Cystic Fibrosis History Page (Madi)
Sponsor me on my Walk to Make Cystic Fibrosis History Page (Beth)
