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Community continues to support Madi Vanstone while she waits for government funding

February 12, 2014   ·   0 Comments

It has been a long battle for the Vanstone family, as the fight continues to get the government to provide funding or a “miracle” drug that is helping 11-year-old Madi cope with the effects of cystic fibrosis.

Last week, Madi received some more support from the community that has resoundingly stepped up to help the Vanstone’s pay for the costly treatment.

Kerry Worrod stopped by the Vanstone residence to drop off a $1,000 cheque on behalf of the Michael Worrod Memorial Fund, which he set up for his son who passed away when he was 25.

Since his son’s passing, Worrod has made it his mission to help those in the community through holding an annual fundraising golf tournament.

Through its seven years, the tournament has helped raise roughly $80,000 for local charities and organizations.

Worrod said when he heard about Madi and her fight to get funding, he wanted to help out.

“I saw Beth, her mom, at another baseball tournament fundraiser for Madi and said I wanted to donate some money to help out with the treatments and that, because they’re having a tough time getting it through the government,” he said.

“This is what I enjoy doing. It is bittersweet after losing Michael when he was only 25, so I do this because he loved kids and it’s just sort of giving back to the community.”

Also on hand to make a donation was Claire Wallace, who has a family connection to cystic fibrosis and felt compelled to help out.

Through the Tottenham Old Timers euchre tournament and a donation box set up at her Tottenham Cleaners store, Wallace donated $300 to Madi.

“I got involved with Madi in the fall when I heard about the baseball tournament,” she said. “My sister passed away three and a half years ago with cystic fibrosis, so she has a little spot in my heart and we wanted to get involved.

“The euchre tournament we do each year through the Tottenham Old Timers and each year we donate to a different cause and this year we chose Madi. Every little bit helps.”

Every little bit does help, especially when the cost of Kalydeco is roughly $300,000 per year.

This past summer, the family learned their insurance would cover half of that and Vertex, the company behind Kelydeco, will pay 30 per cent, leaving the Vanstone’s to pay the rest.

That’s why they are petitioning the government to cover the cost of the treatment that has helped Madi so much.

“We’ve got the petitions going out and getting as many signatures as we can,” said Madi’s mom Beth. “Also, there’s going to be a change.org petition going out and they contacted the CF Foundation in order to help them promote it because they felt getting Kalydeco passed was a worthy cause. Her story is going to be featured and lead the petition out across Canada.”

Next month, Madi and a bunch of her fellow classmates are heading to Queen’s Park to plead their case.

“Jim Wilson be presenting a petition, as well as looking for an update on what’s going on with Kalydeco,” said Beth. “Madi will be accompanied by two classes that have individually written to Jim Wilson requesting funding for Kalydeco with their personal story and connection to Madi, so that’ll be happening as well.”

While the provincial government deliberates on whether or not to fund Kalydeco, Beth said Madi’s health has greatly improved.

“Madi is feeling absolutely fabulous,” she said. “She’s doing better in school, her lung function is excellent, her weight is excellent, issues with her belly aches and headaches have been resolved. She’s like a whole new kid. It’s amazing.”

But she also mentioned that she knows these things can take time.

“I have heard that this is a normal process for drug funding, I’ve heard that it’s not taking any longer than generally and because it has been funded in 11 other countries, that it’s a good possibility, but there’s no guarantee, so because of that we’re still fighting until it’s done,” she said.

“Once the price has been negotiated, which is what they’re doing right now, than each province will individually have to vote on whether or not they’re going to fund it, so we’re still pushing for that.”

In the meantime, a smiling Madi expressed her thanks for all the support she has received from everyone in the community.

“It makes me feel really, really good. I’d like to say thank you so much and I’m feeling a lot better. I’m feeling really good. It’s easier to go to school and just do stuff. I’m not tired anymore all the time.”

Keep an eye out for petitions circling around the community to help voice your support.

By Jeff Doner

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