Hip hop and heart – local dance troupe sets out to help local boy

By Tina Comeau

THE VANGUARD

NovaNewsNow.com

The scariest part is it can happen without warning. The heart-warming part is a group of young people want to alleviate that fear for the family of a young Yarmouth boy.

Twelve-year-old Lyem Magennis is like many typical kids. The Grade 6 Meadowfields student likes dinosaurs, loves video games, and enjoys reading.

But what sets him apart from his peers is he has Barth Syndrome, a rare genetic disorder – primarily affecting males – that, among other things, weakens the heart muscle. To his family’s knowledge, he is the only child in eastern Canada living with Barth Syndrome.

So unlike other kids, Lyem can’t run. He’s small for his age. His fine motor skills are lacking, meaning he does a lot of his handwork on the computer. He’s monitored closely and he’s on medications.

But the biggest concern is people with Barth Syndrome can suddenly, without warning, go into cardiac arrest. There is a defibrillator at the boy’s school. The device monitors heart rhythms and if the heart has stopped it delivers a shock to restart it.

But doctors have recommended that Lyem also have one at home. And these machines don’t come cheap. Which is where the local performance dance troupe Kidzact comes in.

The group, which raises money for children’s charities through its performances, has decided to raise the money needed to purchase a defibrillator for the Magennis family. The cost is $2,500.

Deanna McCarron, the group’s leader, says the young people in Kidzact – which is derived from the phrase ‘Kids take action’ – are thrilled to be raising money to help someone local in their community.

“What our professional group does is we have a production, a dancing and singing production, and people can hire us – like at a school, or a festival or any event – and they pay a fee. We take that fee and put it directly in the fund,” McCarron says, which in this case will be used to buy a defibrillator.

Lyem’s mother Jasmine and his grandmother Debra are overwhelmed and deeply touched. Having a defibrillator at home will bring them great peace of mind.

“I know CPR, I can do that if I have too, but that’s just buying a few minutes,” says Lyem’s grandmother. “The defibrillator would start his heart again, it would make us feel a whole lot safer.”

Debra Magennis knows a lot about Barth Syndrome. Not just because of her grandson, but because she had a son who died of the disorder at the age of seven months. Lyem was 19 months old when he was diagnosed.

Magennis talks about telling her grandson that Kidzact wanted to help out their family.

“I said it would be a good opportunity for us to talk about Barth Syndrome and for people to know about you, and I said it would help out Kidzact because it’s publicity for them. He said, ‘Gram, so it’s a win-win situation.’”

His next reaction was that he truly felt loved. Because the truth is, although Lyem’s heart may be weak, when it comes to compassion it beats just as strongly as the next kid’s. And so does his family’s.

“I don’t know these people,” Debra Magennis says. “But it just restores your faith in people. They don’t know us, but they want to help.”

Anyone wanting to book the high-performance dance troupe – which specializes in hip hop and break dance – can telephone 740-2572 or 749-0283. They can also email kidzact@eastlink.ca or visit the group’s website at www.kidzact.org. An account has also been set up at Scotiabank.