Miranda Zeppieri may have Tuberous Sclerosis Complex, but she still lives life to the fullest. She has been biking 200 km every year to raise money for the Princess Margaret Cancer Centre. (Submitted photo)

Alumnus of the Hospital for Sick Children gives back

By: Patricia Leboeuf

Posted on Thursday, October 11, 2017

Miranda Zeppieri has been living with Tuberous Sclerosis Complex (TSC) a rare genetic disorder producing tumours in her organs, her entire life.

Since the age of five, she has been in hospitals more times than she can count. She has been poked and prodded and been part of experimental medical trials. She has often suffered from seizures and near-constant nausea. Not only have smaller tumours spread throughout her body, but a grapefruit-sized one in her kidney required five years of treatment to shrink. She also has seen her brother fight the same disorder and watched her mother triumph against kidney cancer.

Suffice to say, Zeppieri knows firsthand the difficulties that come from living with a rare disease. It can be lonely, it can be painful, it can be limiting. But she refuses to let TSC define her.

She has chosen to live her life boldly, and refuses to back down from any challenge she may face. She earned her degree to become an Early Childhood Educator, and now works with the Petawawa Military Family Resource Centre (PMFRC).

Because feeling sorry for herself has never been option. “I don’t want to be that kind of person and show that example to my students,” said Zeppieri. “I want to show them that you can do all these things if you try.”

One of her more enduring endeavours involves raising funds for the Princess Margaret Cancer Centre, the largest integrated cancer research, teaching and treatment centre in Canada. It is a hospital where she has received Magnetic resonance imaging (MRI) tests, and she felt that the funds would be very well used.

For the past three years, she has participated in Enbridge Ride to Conquer Cancer. About 5,000 cyclists take part in the two-day, 200-km bike ride, making their way from Toronto to Niagara Falls to raise money for the Centre. In June 2017, the ride raised $20.533 million.

For someone who hadn’t ridden a bike in years and wasn’t the most physically fit, her first ride was a test of fortitude. But she was inspired by her mother’s battle with kidney cancer and her own looming 31st birthday and pushed against the pain. She also rides with the memory of family members and friends who have fought cancer. “It is addictive,” said Zeppieri of the bike ride, “and I wanted to show people that just because you are living with (challenges) that you can still be awesome and outrageous and do some super awesome things,” she added, pointing out that she is an advocate for those living with rare medical and chronic illnesses.

TSC is a very rare genetic disease, and the signs and symptoms vary widely depending on where the tumours grow. It can lead to kidney, heart, skin, lung, eye, and brain problems as well as behaviour and communication issues. There is no cure, but there are some treatments that help mitigate the symptoms. About 1 million people are affected worldwide.

Zeppieri has always volunteered herself for trials and has been open with her struggles. Her hope is that by undergoing experimental treatments, she may benefit others with TSC. “If it works, cool, but if not, maybe it is helping somebody else,” said Zeppieri.

She is planning to do the ride again in 2018 and has even considered doing additional rides in Ottawa. “It is kind of how I show my support to not just for cancer, but for having been part of the medical world in some way,” she said.

People can donate to her 2018 campaign for the Enbridge Ride to Conquer Cancer benefiting Princess Margaret Cancer Centre by searching for her at ride.conquercancer.ca/Toronto.