My parents came to Canada from Italy in 1958. They had three children, my oldest brother, Gaspare, and younger brother, Frank, with me – the only daughter – in the middle.
When Gaspare was five years old, my parents noticed something was off in how he walked. He was later diagnosed with Duchenne muscular dystrophy. They took Frank to be tested, and sadly, the test returned positive – both of my brothers had Duchenne.
Though it wasn’t easy growing up with Duchenne, my parents did a great job ensuring we had everything we needed. We moved into a bungalow that was wheelchair accessible, and the house was always filled with food, fun and love. We would have great fun playing table hockey, cards and monopoly as a family, and Gaspare would dazzle us with his model cars.
Sadly, Gaspare passed away at 19, leaving a giant void in our hearts.
But then my husband, Helder, came into our lives. We would go out with Frank to movies, restaurants, Ontario Place and Blue Jays games, enjoying our time together as young adults.
Frank played in a wheelchair hockey league, which he truly enjoyed and excelled at – winning many trophies over the years. His curious spirit led him to go to Humber College for computer programing, where he met lifelong friends Lui and John. They would take our wheelchair-accessible van and go out with Frank regularly – he had a blast being with them!
In 1987, Frank was hospitalized with pneumonia and was in the hospital for 14 months. At that time, the decision was made to put him on a respirator, and my parents underwent a ventilator training program to have Frank at home.
While he was in the hospital, I was pregnant with our first child, Anthony. Two months after he was born, I received the results from genetic testing that I was not a DMD carrier. After Anthony, my two daughters were born, Cristina and Elizabeth.
Frank was delighted to be an uncle and truly loved the kids. He was so happy to watch them grow up and eventually see them get married. The kids and their spouses would regularly get together with Frank to watch movies, play board games, and root for Blue Jays and Maple Leafs.
As with many men with Duchenne, it was important for Frank to stay connected with friends and family. So he operated a computer with his knees and fingers, allowing him to write emails, make videos and voice calls, play games, and create new friendships worldwide.
My brother was a techie, Trekkie, gamer, beloved family member and a friend to many. Above all, he was an invaluable inspiration. A smiling face amid adversity. His optimism, faith and humour made him the strongest and wisest person I know.
He lived an incredible life and passed away surrounded by his loving family just a few months shy of his 59th birthday.
Frank lived an incredible life and passed away surrounded by his loving family just a few months shy of his 59th birthday.
If you are already fighting against this disease, I hope you continue pursuing your passions and live as fully as possible. If you or a loved one is newly diagnosed or simply curious about living with this condition, I hope this story has helped you understand some of the challenges but also the triumphs that come from having Duchenne. Thank you for taking the time to read my story.