“It’s so hard to remember my dad before his illness,” says Sean. “Watching that warm, outgoing, big personality shrink so quickly when he got sick was really horrific.”
Robert’s condition progressed shockingly fast. A successful criminal defense lawyer, he completed a jury trial in November 2016. Just months later, by February 2017, he was in emergency care and only periodically lucid. By May, he had largely lost the ability to speak. Robert passed away three months later.
The deterioration was so rapid that physicians were unable to even identify his specific neurodegenerative condition.
“My family really couldn’t do anything except watch, try to adjust to each horrible new phase, and give him and each other what little comfort we could,” says Sean, a public defender based in New York.
Today, almost exactly five years after Robert’s passing, Sean is looking to turn the tables on this feeling of helplessness. In August, he will embark on a record-breaking swim to raise funds for the University of Toronto’s Tanz Centre for Research in Neurodegenerative Diseases.
The longest unassisted open-water swim ever completed in Canada or by a Canadian
Sean will start at the Freedom for Hungary Monument in Budapest Park in Toronto – a landmark of personal significance as his family fled to Toronto from Hungary after the Second World War. He’ll then swim to Lakeside Park in Port Dalhousie and back – a 100-kilometre roundtrip distance requiring between 35 to 50 hours of continuous swimming.
Because it is an unassisted swim, Sean will not be able to use a wetsuit or other floatation devices. His will be the longest unassisted open-water swim ever completed in Canada or by a Canadian, and the eighth longest current-unassisted open-water swim on record globally.
Funds raised for Sean’s swim will support Tanz Centre scientists as they lead urgently-needed investigations into debilitating neurodegenerative conditions like Alzheimer’s disease, Parkinson’s disease, ALS, Lewy Body Dementia and Creutzfeldt-Jakob disease.
“Having grown up in Toronto, I have a lot of respect for the University of Toronto, the Tanz Centre and what they do,” says Sean. “I’m hoping this swim inspires others to dream big while also supporting a wonderful cause. Every little bit helps.”
Although Robert will not be here to witness the swim held in his memory, Sean knows he will be with him in spirit.
“I hear [my dad’s] voice a lot when I’m struggling with long swims. I picture him talking to me and that helps me get through the tough moments. His voice will definitely be in my head during this swim, encouraging me to keep going.”