BRAUN: CF advocate Madi Vanstone learning to live her best life

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Madi Vanstone spent the first half of her young life trying not to die.

These days she’s learning how to live life to the fullest.

As her mother, Beth Vanstone puts it: “She has a future.”

Madi, who turns 21 this month, was an infant when she was diagnosed with cystic fibrosis (CF). The life expectancy of children with CF then was about 30 years.

CF causes thick secretions in the lungs and other organs and eventually destroys the lungs; patients are often hospitalized — Madi pretty much grew up at Sick Kids. She was told she’d need a double lung transplant by her 15th birthday.

Then, thanks to life-saving gene modulators, Madi’s life changed dramatically when she was 12. The drug Kalydeco restored her lung function and returned her to health — but the prohibitive cost was not covered by OHIP.

The medication was out of reach for many Canadian children with CF.

That’s when Madi and her mother turned into warriors for other CF patients.

A decade ago, columnist Christina Blizzard wrote in the Toronto Sun about seeing Madi at Queen’s Park presenting the case that CF drugs should be covered by OHIP — a wan little girl who bravely stood up to bureaucracy and reduced a roomful of flinty reporters to tears in the process.

She and her mother stared down various politicians until the government agreed to pay for these drugs  — the way every other G20 country pays for its CF patients’ meds.

In September, after a decade of tireless advocacy, the newest Vertex gene modulator, Trikafta, was approved and publicly funded across Canada.

Over those 10 years, Madi won awards for advocacy and philanthropy.

Over those 10 years, there were incalculable losses. Many CF patients died, including Madi’s best friend.

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 In a recent interview, Madi said she’d stepped back a bit to regroup.

“I’ve really been on the down-low for the last few years. I suffered a lot of trauma and ended up in therapy.”

Madi still does advocacy work when she feels up to it, but she had to figure out survivor’s guilt and how to handle grief over lost friends.

“My childhood was traumatic. I am so happy other kids won’t have to go through it or experience the same sort of childhood.”

She recently had a diagnosis of PTSD, not surprising, given all she’s been through.

“The coping mechanisms I’d developed going through the fight for Kalydeco — the diagnosis helped me identify some of that, and work through it, and make changes.

“I had never let myself feel certain things. You know — if I ignore the bad feelings, maybe they’ll go away. I’m teaching myself now that it’s OK to feel sad. 

“It’s a period of adjustment. I think I missed out on having a normal childhood. I had to grieve that.

“Now I’m trying to refocus and enjoy every moment.”

Madi is currently establishing herself as a photographer. She studied graphic design at college, but then followed her heart to photography, a passion since childhood.  Her business card ([email protected]) is printed, and her website is almost ready.

“I just want to capture beautiful things. I notice beauty. So many people asked me to take photos for them, I started to think, ‘maybe I’m good at it!’ So I pursued it.”

Recently, Madi wrote about her love of photography: “The world is so beautiful. I think it’s nearly impossible to capture it the way I see it, but I want to spend the rest of my life trying.

“My goal in my work is to capture love in its purest form. I want to capture raw moments, and true connection. I don’t want my work to just look beautiful, I want it to feel beautiful.”

Right now, she said, “it feels as if I’m at a point where I’m learning to live normally. It’s a little scary, but it’s a lot of fun.

“Before, my future wasn’t going to be that much of a future. Now I’m realizing I have the whole world. I have so much time.”