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By now, perhaps you’ve seen The Butterfly Child, the TSN special feature that has created substantial buzz around the internet and social media after premiering on the national sports network earlier this week.

For those unfamiliar with the emotional and often heart-wrenching segment, star Jonathan Pitre is a courageous 14-year-old boy from Russell, Ontario who was born with a life-threatening skin disease called EB. EB is a rare genetic disorder that causes the skin to repeatedly blister, shear and scar. Approximately 2,500 Canadians suffer from the disease — among the most painful known to medicine. To date, no cure has been found.

What you might not be aware of is Jonathan’s connection to Grouse Mountain. In February, Jonathan visited the Peak of Vancouver where he was the honoured guest at the third-annual Bella’s Ball, a major fundraising opportunity for supporting charity DEBRA Canada. This very special annual event is centred around a broomball tournament held on our mountaintop ice skating pond, with all funds directed to DEBRA Canada’s financial assistance program to help EB families afford the medical supplies and devices that can improve everyday life.

The success of Bella's Ball is close to the heart of North Shore resident, Grouse Mountain passholder and Tyee member Ryan Hultman who spearheaded the initiative as his daughter Raquel is afflicted with the disease.

While offering EB sufferers an opportunity to connect with fellow patients, Bella’s Ball raised more than $32,000 for the cause this year and saw 120 participants enthusiastically hit the ice in support. To date, more than $92,000 has been raised for DEBRA Canada since the event’s inception in 2013.

To watch The Butterfly Child on TSN.ca, please click here.

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