Heading into its seventh instalment, Alexander McCormack’s “Dining for Duchenne’s” is a fundraising force to be reckoned with. The April 27 event at Riverlands Red Barn—featuring an elegant dinner, silent auction and dance—sold out in less than a month.
McCormack is the captain of a fundraising team for Muscular Dystrophy Canada called ‘Thee Golden Spirits.’ The dinner serves as their main fundraising event leading up to the Burnaby Walk and Roll for Muscular Dystrophy.
“I want to help fund research,” he said. “You can get the muscles to regenerate.”
Born and raised in Pemberton, McCormack himself has Duchenne Muscular Dystrophy (DMD), considered one of the most severe forms of muscular dystrophies. Parents of kids with DMD usually start to spot muscle weakness in early childhood, and the condition becomes worse over time.
McCormack is on a respirator now and can only move his tongue. However, advancements in technology and the loving support of his family mean the Canucks fan’s unwavering optimism and kind nature take centre stage.
McCormack’s older brother Andrew also had DMD. He died in 2004 at the age of 25. The McCormacks spoke at home to Pique about their day-to-day life and their determination to help find a cure for DMD.
“When you are a toddler, everything is normal and you are walking,” said Susan, Alexander’s mom. “A lot of the boys who have had DMD are likely to have fallen arches. They start falling more and their balance is off. Eventually, you end up in a wheelchair. DMD is one of the harshest ones. It affects your muscles and almost everything is a muscle in your body.”
The disorder can also affect people’s hearts and lungs.
“Andrew passed away because he had congestive heart failure. It was his heart that ended up being affected,” said Susan. “He lost his battle. Alexander is weaker in his lungs. He is on a respirator. He is a very strong-spirited person who wants to make a difference in this world.”
McCormack is an avid traveller and sports fanatic. He explained losing hope is never an option. The young man wants to participate in clinical trials when they become available to him.
Research into the condition has been slow but successful over the last decade.
“All of the trial studies that they do are on children,” said Susan. “They have gotten to a point now where they have proven that some of these treatments work. They are stretching it out to see how the older people with Duchenne’s react to it. Alexander’s mission is that we raise funds to help other Muscular Dystrophy patients. Equipment and research are his two main choices so they honour that.”
The family are well-known and well-loved around Pemberton, and it is no wonder the fundraising event is a roaring success year on year.
“Watching this happen to your child is something that you wouldn’t wish on anyone,” Susan said. “The support from our family and friends has just been incredible all through the years. Both my boys have had such a strong spirit. We are hoping that one day, they are just going to say, ‘Come on down.’ We will go wherever.”
The McCormack home is adapted to suit Alexander’s needs. His sister, Hilary, uses her engineering skills to work on technology for him. “She makes adaptive things for me,” he said.
The family hopes the event will help build awareness around DMD, but also for accessibility issues in general, pointing out some places in Whistler are not accessible. Those living with disabilities often feel forgotten about.
“Even in the drug store, the aisles are too narrow so he can’t go down them. You don’t even think of things like that,” said Susan. “Dining for Duchenne’s also creates awareness that McCormack and his family will not rest until DMD is a thing of the past. Until then, McCormack’s stellar fundraising efforts and vivacious energy will inspire everyone he meets.
“I want to make sure this is not something anyone else has to go through,” he said.
Find more information about the event here. People who are not able to make the event can donate directly to the group’s fundraising efforts here.
