OTTAWA — Brandon McCarthy told his mother Liliane Robinson not long ago that he was ready to die.
But Brandon, who had Duchenne muscular dystrophy, wanted to make sure his mom was ready to let him go when that time came.
Liliane, who left her job in 1995 to provide care around the clock for her son, says the two had became very close. She says Brandon explained he was very worried about how she would take his passing. As hard as it must have been, Liliane told her son that she, too, was prepared. “I said, ‘I’m ready, Brandon, because I don’t want to see you suffer like that any more.’”
Brandon ignited a public storm that forced the former provincial Liberal government to partially rescind a 2011 decision to cut allowances for recipients on special diets. He died Monday in hospital on his 24th birthday.
Duchenne MD is a degenerative disease of the muscles. Brandon was diagnosed when he was five. Confined to a wheelchair, Brandon suffered from numerous other ailments, including heart and respiratory problems. He weighed about 30 kilograms, and in recent years he was fed through a feeding tube. Life expectancy for people with Duchenne MD is 25 years.
Liliane says doctors are baffled over the cause of Brandon’s death. He had to be taken by ambulance to The Ottawa Hospital’s General emergency department on three consecutive nights over the weekend and died Monday morning. Liliane says her son underwent X-rays and tests in hospital, but none could pinpoint what was wrong.
Brandon started complaining about a sore stomach last Friday. At first, Liliane suspected it had something to do with antibiotics he was taking for a sore throat. Doctors at the General thought the pain could be connected to his appendix, then suspected it was a gastro-intestinal problem. On his third ambulance trip, Liliane says, Brandon was administered an anti-nausea drug because he was feeling very sick. After he arrived at hospital, his condition deteriorated rapidly until his death about six hours later. Liliane says doctors offered to have an autopsy done, but she declined.
Brandon “wanted to go,” she says. “And he wouldn’t have wanted (an autopsy).”
Liliane says Brandon’s mood changed over the past three months. He wasn’t playing his video games with his specially-designed computer board any more, and Liliane says he spent a lot of time lying on the couch. “I could sense (he) was getting tired (of living).”
“He was my best friend. I miss him,” she says. “To be with someone 24 hours a day … I’m on the couch now and I don’t see him. It’s going to be hard.”
In 2011, the Ontario Ministry of Community and Social Services targeted those with certain diseases that it felt did not need the special-diet allowance — even though its own medical experts argued people with weight-loss illnesses such as MD should continue to receive the money — $250 a month in Brandon’s case.
Brandon’s allowance was reinstated shortly after his story was told in the Citizen.
Then-community and social services minister Madeleine Meilleur promised some of the revised rules would be changed back so that sufferers of weight-loss diseases would get the assistance.
But the change of heart came only weeks before the 2011 provincial election. Liliane, not trusting the government, filed a complaint on behalf of Brandon with the Human Rights Tribunal of Ontario in January 2012. The re-elected Liberals avoided a hearing by assuring the commission that sufferers of MD and two other weight-loss diseases, Huntington’s and Parkinson’s, would qualify for the money.
Liliane says she will remember her son as someone who spoke his mind and rarely complained, especially about his disease.
“I could complain all the time,” Liliane remembers her son saying. “But I choose not to. I want to live.”
She says Brandon told her to “take the time to rest” after he was gone.
A funeral mass for Brandon will be held at 10 a.m. Saturday at St. Gabriel’s Church, 55 Appleford St., Gloucester. Brandon’s sister, Candice McCarthy, and his grandfather, John Robinson, will deliver eulogies.