A father’s dream comes true when his 10-year-old son, who suffers from a rare disease, is presented by Michel Lacroix as the “Premiere of the Etoile”.
When Chris Nilan played for the Canadiens in the 1980s – and won a Stanley Cup title in 1986 – he organized an annual charity golf tournament.
It was called the Chris Nilan Golf Classic and benefited the Montreal Children’s Hospital, which Nilan has always had a heart for and still visits. Nilan hosted the tournament five years in a row when he played for the Canadiens and the last time in the summer after he joined the New York Rangers in 1988.
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Now Nilan is hosting a new charity golf tournament: the first annual Chris Nilan Golf Classic Powered by the Liam Foundation, which takes place Monday at Summerlea Golf and Country Club in Vaudreuil-Dorion.
The Liam Foundation was founded in 2019 by Kevin Reason, whose 10-year-old son Liam has PolG disorder – a rare, debilitating mitochondrial disease that affects muscle cells in the body, deteriorating mobility and strength over time. In Liam’s case, the mitochondrial disorder is in his central nervous system, leading to developmental delays (autism), epilepsy and ataxia (balance and coordination problems).
There is no cure for mitochondrial disease, but the Liam Foundation is funding a drug trial at the Montreal Children’s Hospital to help Liam and other affected children. Children from all over the world, including the United States, Brazil, Australia and India, have been brought to Montreal by the Liam Foundation. It is hoped that the drug will increase mitochondrial levels in the body’s cells and improve performance. The Liam Foundation is currently treating 32 children with the trial drug developed by a Spanish pharmaceutical company.
The road to the cup
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Reason met Nilan five years ago at an event for former Canadiens players at the Bell Centre when they sat at the same table. Reason told Nilan about Liam’s struggles, which the former player was very concerned about. A friendship developed and Nilan became involved with the Liam Foundation. Last summer, Nilan and some friends in his hometown of Boston helped organize Liam’s “Journey for a Cure” bike ride from Boston to Montreal, which raised $120,000.
Tuesday’s golf tournament, which sold out with 36 groups of four in two days, raised $140,000. Former Canadiens participants contacted by Nilan and his wife, Jaime, included Larry Robinson, Serge Savard, Steve Shutt, Guy Carbonneau, Chris Chelios, Stéphane Richer, Rick Green, Patrice Brisebois, Petr Svoboda, Murray Wilson, Mathieu Dandenault, Steve Bégin, Lucien DeBlois, Mike Lalor, Karl Dykhuis, PJ Stock and Terry Ryan. Current Canadien Arber Xhekaj and team owner Geoff Molson also attended.
“Chellie hates golf, but he showed up,” Nilan said of Chelios.
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The golf tournament included a dinner and an auction. A framed and signed Nilan Canadiens sweater sold for $21,000 after one of the two bidders decided to give it to the other and write a check for $20,000 (his final bid) to the Liam Foundation.
“So the jersey went for $41,000!” Nilan said.
An old red Forum seat signed by Nilan and bearing his picture and number sold for $25,000. Geoff Molson also donated six seats behind the Canadiens bench for a game next season to the auction.
The Liam Foundation plans to expand the golf tournament next year and has already booked all 36 holes at Summerlea, instead of just 18 as this year.
“Liam is very dear to my heart,” Nilan said Tuesday. “I love little Liam. He’s such a good little man. A beautiful little boy… he’s got that little twinkle in his eye. But he has a lot of difficulty communicating and walking.”
“Since Liam has been taking this medication, he has become more mobile,” Nilan added. “He can stand up and walk – albeit unsteadily. Before, he couldn’t walk at all. He can also say a few words here and there.”
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When the Canadiens alumni posed for a photo before the golf tournament, they wanted Liam to be there, so he was front and center, sitting on Nilan’s lap.
“You can see his big smile… everyone who saw that had tears in their eyes,” Liam’s father said of the photo on Tuesday. “It was so emotional.”
“Liam is doing really well,” the father added. “We were hoping this medication would slow the progression of the disease and it seems like it is doing that. He can walk again, is very aware of his surroundings and is much stronger.”
Michel Lacroix, the Canadiens’ stadium announcer at the Bell Centre, also attended the tournament and helped make one of Liam’s father’s dreams come true when he announced the little boy as the tournament’s first star before dinner.
“One of my dreams some nights when I go to sleep is that Michel Lacroix announces Liam as ‘la première étoile,’ and he did that yesterday,” Reason said. “Liam was the first star, and you should have seen his face. He got a standing ovation… I cried, Michel Lacroix cried. It was very emotional. But that little dream I had came true.”
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