"It was scary but I didn't really see another option," says Heather Bos, pictured with Dr. Taufik Valiante, neurosurgeon and Surgical Director for UHN's Epilepsy Program. Dr. Valiante performed successful surgery on Heather in 2018. (Photo: Courtesy Heather Bos)

In 2013, 27-year-old Heather Bos was diagnosed with epilepsy after suffering from seizures since she was a teen. Over the next four years, her health steadily declined – due to daily seizures she couldn't finish university and was unable to hold a job.

Medications weren't working and her doctor was out of treatment options. Heather was losing hope that she'd be able to live a normal life again.

Thankfully, in 2017 she was referred to UHN to get the help she needed. She met Dr. Danielle Andrade, a neurologist in the Epilepsy Program at UHN's Krembil Brain Institute, and knew she was in good hands.

Only three days after her initial appointment with Dr. Andrade, Heather was admitted to UHN's in-patient Epilepsy Monitoring Unit (EMU). She had multiple stays throughout 2017, undergoing invasive and isolating testing and treatment to find the cause of her seizures. Her care team never gave up, they were determined to help Heather.

The testing required Heather to be hooked up to machines and confined to her hospital room for weeks at a time. Friends and family came to visit, but Heather received the most interaction from the researchers who visited her each day, as she had agreed to participate in an ongoing study for epilepsy research.

"The researchers at UHN were so kind and helpful, they gave me hope every day," says Heather. "It was hard, but they motivated me to keep going."

'Saving lives is definitely what heroes do!'

Eventually the team realized that medications would not alleviate the seizures and non-invasive treatment was not an option for Heather. Her extended stays in the EMU allowed Dr. Taufik Valiante, neurosurgeon and Surgical Director for UHN's Epilepsy Program, to evaluate whether she was a candidate for the most invasive treatment yet – brain surgery.

After months of testing, Dr. Valiante approved Heather for surgery. The plan was to remove the portion of her brain that was causing the seizures.

Heather was terrified.

"It was scary but I didn't really see another option," says Heather. "My choices were to continue having seizures, or have brain surgery."

On Friday, March 24th, the Epilepsy Group at UHN's Krembil Brain Institute will mark Purple Day in-person between 9 a.m. and 3 p.m. in the atrium at Toronto Western Hospital. Epilepsy awareness activities will include the latest research from trainees, staff, clinicians and researchers. Get interactive with an EEG brain scan, have a chance to win swag and indulge your sweet tooth at the bake sale in support of this great cause.

The surgery took place in 2018, and thanks to the skill and expertise of her care team, it was a success.

While she still experiences minor seizures, she has a treatment plan that works for her and she's no longer watching life pass her by. She's even going back to finish university almost 10 years later, this time to study criminology with the goal of becoming a police officer.

To thank the team that gave her life back, Heather made a donation through UHN Foundation's Honour Your Hero program. The program provides the opportunity for patients and their families to express gratitude for the care they received with a personal message of thanks while also making a gift in support of UHN.

"The dedication and hard work they did for me was absolutely amazing, and they are heroes to many people, not just me," says Heather. "Recognizing these heroes shows that getting better is possible and saving lives is definitely what heroes do!"

Heather made multiple gifts in honour of her care team, including Drs. Andrade and Valiante, nurse practitioner Alina Mednikov, and Victoria Barkley, Dr. Valiante's technical research assistant.

"They gave me my life back," she says. "Every little bit helps, and if they can use the donations to find new treatments or help other people get better, that would be amazing."

With a gift to Honour Your Hero, people can say thanks to the staff at UHN for all that they do – and help more patients like Heather get their lives back. To learn more or make a gift, visit honouryourhero.ca

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