Maddy’s Gala — started by a pair of grieving parents looking to give back to a children’s hospice that helped them in their darkest hours — has blossomed into a beautiful and bountiful evening that raises six-figure amounts for Roger Neilson House.
The 12th annual event returned Saturday to the Brookstreet Hotel, attracting 420-plus guests and bringing in more than $110,000.
There to welcome everyone and thank supporters “from the bottom of our hearts” were Dean and Jeanine Otto, along with their grown daughter, Hannah, 19.
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The Ottos created Maddy’s Gala in honour of their younger daughter, Madison “Maddy” Otto, who, in 2007, passed away at the age of five.
Guests heard how Maddy had gone from happy and healthy, to suffering a seizure, to going to CHEO to get checked out, to dying less than 48 hours later. She had an inoperable, terminal brain tumour.
Maddy’s final hours were spent at Roger Neilson House, a pediatric palliative and respite care facility located on the grounds of CHEO. At first, the family was hesitant about going to the new facility. “We knew it would mean accepting the fact that she was going to die, but it was the best decision we ever made,” Jeanine told the room. “The six hours that we were there, and the two years that we went for bereavement counselling [at Roger Neilson House] saved our lives.”
There was not a dull moment at the gala, which saw the Tunis Shriners of Ottawa, No. 179., serve as presenting sponsor. Jugglers and acrobatic artists from Cirque Carpe Diem entertained and engaged guests during the cocktail hour. Even Ottawa Senators defenceman Ben Harpur got a taste of circus life.
The performers continued to wow guests throughout the dinner with their fancy aerial acrobatics.
The gala packed as much substance as it did style by bringing profound awareness to the services Roger Neilson House offers families facing progressive life-limiting illnesses.
Ottawa mother Emma Gofton earned herself a standing ovation after sharing with guests how Roger Neilson House has become a “second family”. Her two children, ages 14 and 16, suffer from an ultra-rare genetic, degenerative neurological condition that weakens their muscles and makes it progressively harder for them to talk, breathe, eat and move.
“What I quickly learned is: Roger Neilson House isn’t about learning how to die well, it’s about learning how to live your life as best and as a full as you can, for as long as you have,” said Gofton. “Thankfully, they have helped us do that.”
“What I quickly learned is: Roger Neilson House isn’t about learning how to die well, it’s about learning how to live your life as best and as a full as you can, for as long as you have.”
The family’s initial visits to Roger Neilson House were for respite. Over time, as the children’s needs changed and their health became more fragile, the hospice has become a place for their pain and symptom management, as well as for finding friendship.
“For my kids, they get to go to a place where they’re not different. Everyone has a wheelchair. Lots of people have feeding tubes. Lots of people need to be on a breathing machine. You’re not stared at. It’s a place where you can be with your best friends.”
For Gofton, she’s part of a parent-support group at Roger Neilson House that understands what she’s going through in a way that her friends with normal lives (dubbed “normies”) simply cannot. Other Roger Neilson House families were also there that night, cheering Gofton on as she ably and eloquently delivered her speech.
“Through the parent-support group I was able to share those scary thoughts that you don’t even want to utter aloud to yourself you’re so afraid of them being real. You can share with that community. It’s safe. You can share ideas of what’s worked for you or have you thought about this, that or the other.”
Gofton eluded to the inevitable final journey that lies ahead for her family while speaking in such a comforting way about the compassion shown by Roger Neilson House. “It is a thing of beauty to see. Our extended family — that’s what these people are to us. The nurses, the doctors, the counsellors, the social workers, all these volunteers are our second family.”
There was an exceptionally strong turnout that night from the Ottawa Senators, including those who have hung up their skates for good, such as Daniel Alfredsson, Chris Phillips and Chris Neil, the latter of whom shares the role of honourary chair with his wife, Caitlin Neil. The mother of three also sits on the board of directors at Roger Neilson House.
The facility was founded by the Ottawa Senators Foundation in 2006 in memory of Hall of Fame coach Roger Neilson.
Alternate captains Mark Borowiecki, Mark Stone and Zack Smith and goaltender Craig Anderson were among the strong turnout of Sens players. Smith donated, along with Dean Otto, a five-course gourmet dinner for eight that sold for $5,000 during the live auction. Otto is a trained chef who works as a purchasing manager for the Shaw Centre. Smith’s wife Britt Smith is part of the gala organizing committee.
Some of the other auction items included a five-course dinner for eight at Create Kitchen at the Shaw Centre; a skating party for 100 people, followed by pizza, at the Canadian Tire Centre (CTC); a family movie afternoon with Craig Anderson and a couple of his buddies; and dinner and a box suite for the Corey Hart concert at the CTC.
The evening featured a balloon raffle with the prize of a one-week stay at the Hilton Doubletree in Miami. It was won by the Sysco table, which donated it back so that the prize could be sold off in the live auction.
Spotted from the business community were Paul Chiarelli, president and COO of the private, global investment management firm and holding company Wesley Clover; Chris Spiteri, managing partner of Ursulak & Spiteri LLP; Quality Entertainment owner Brian Henry; and Creative Edge Studio owner Steve Hanniman. Also seen were Business Council of Canada president and CEO Goldy Hyder, board chair of the Ottawa Senators Foundation, and Barbara Crook and Dan Greenberg from their charitable Danbe Foundation.
The evening was emceed by Ottawa media personality Lianne Laing, who reflected on how the gala has grown from a small initiative, organized by some close friends and family, to “one of the city’s premier fundraising events”.
A touching collection of images from Maddy’s sweet life was projected onto the giant screens, to honour her memory. Some dinner guests were seen discretely wiping at the corners of their eyes with their fancy dinner napkins.
“You can’t help but see your own family pictures and memories mixed in,” said Laing. “You can’t help but see Maddy — this life force — fill the screens, and you can’t help but wonder what a strong, powerful and independent girl Maddy would be today.”
Maddy’s Gala, said Laing, has brought about a transformational healing process. “You can see it, you can feel it in the room,” she said. “It did go from being so many years ago about pure grief and sadness to really beautiful memories and a wonderful celebration of life.”
— caroline@obj.ca
