It all started with a mother who couldn’t help but notice that her baby was failing to reach important milestones in his development.
“Don’t worry,” replied the doctor when she raised her concerns with him. “Just wait and see.”
But, the doctor’s advice didn’t sit well with Angela Firestone and her husband, Noah Firestone, owner of Luxe Bistro in the ByWard Market. The couple instead successfully advocated to get their six-month-old son Zev checked out by a neurologist at the Children’s Hospital of Eastern Ontario in Ottawa.
The specialist who met with Zev suspected Angelman syndrome (AS), a rare, genetic neurological disorder that occurs in one out of 15,000 births. His hunch was confirmed two weeks’ later, when the test results came back.
Next, the Firestones did what many people do when presented with an unfamiliar medical condition: they turned to online search engine Google to find out more. “At first, we were pretty devastated,” recalls Firestone of the impersonal picture painted of Angelman syndrome. “The outlook was bleak.”
Angelman syndrome occurs during fetal development. It’s caused by the deletion or mutation of the UBE3A gene in our brain, resulting in neurons functioning improperly and causing intellectual impairment and motor dysfunction. It results in lack of speech, seizures, poor sleeping and difficulties in walking. Patients have a normal lifespan but require 24-hour care.
The Firestones dug a little deeper and came to discover there were new treatments and cures being developed by scientists throughout the United States that could prevent or reverse some of the features of the disorder. The transformative research is being funded through a non-profit organization called FAST (Foundation for Angelman Syndrome Therapeutics). It also has chapters in the U.K., France and Australia.
"I’m a restaurant guy, so I know a lot about wine and food and service, but when something like this happens, you dive in and you do everything you can do within your power — as you do for your kids — to figure out what can be done."
Firestone has worked 26 of his 38 years in the restaurant industry. It’s what he knows best. Yet, following the diagnosis of his son, he started reading up on the medical world of genetic therapy and formed the view that it was “a light at the end of the tunnel” for families dealing with AS.
“I’m a restaurant guy, so I know a lot about wine and food and service, but when something like this happens, you dive in and you do everything you can do within your power — as you do for your kids — to figure out what can be done,” said Firestone during an interview at Luxe Bistro.
Not only did Firestone launch a Canadian chapter of FAST last summer, to make the fundraising process easier and more credible, but he and his family are hosting A Cure in the Capital benefit on Thursday, April 11th at his restaurant, located at 47 York St.
The sold-out, first-time event will take place over two floors to include the restaurant’s new second-storey private Luxe Loft dining room. If the evening is anything like the Heart of Glass fundraisers that the Firestone family used to host for the Heart Institute, expect a party that’s hip and happening. There will be plenty of food — including taco and oyster stations — along with martini, tequila, champagne and wine bars.
All the proceeds from A Cure in the Capital are going toward FAST CANADA and the medical research it’s funding in the United States to develop the cure for Angelman syndrome.
The restaurateur was joined during the interview by his wife and their two young children, four-year-old Mavi and Zev, who’s two and a half (the siblings are only 18 months apart). Zev has the happy demeanor common among children with Angelman syndrome. He isn’t yet walking but he can manoeuvre himself around the room doing the classic baby army crawl.
After the diagnosis, Angela left her job in the human resources department of The Ottawa Hospital so that she could take her son to his appointments, as well as help him with his physiotherapy, occupational therapy, and speech and language therapy.
A Cure in the Capital is being backed by the Firestone family, along with their network of close friends and business contacts. Supporters include Colizza Bruni Architecture (Angela’s father’s firm), HN Homes, prominent lawyer Donald Bayne and his wife Sheila Bayne, from Homestead Land Holdings, and the Kenny Lees Investment Advisory Team from BMO Nesbitt Burns.
The Firestones originally hoped to raise $50,000 but have set a new goal of $100,000 after attracting such strong ticket sales, business sponsorship and donations. The evening also includes an online silent auction. “It’s so heart-warming to see so much support,” said Firestone. “Every single person I spoke to stepped up.”
Attendees will also include Paula Evans, the Chicago-area mother who founded FAST in 2008 after her daughter was diagnosed with AS. “She’s the reason why people are now comfortable with using the word ‘cure’,” said Firestone. “In the early stages, nobody touched that word because it raised expectations too much and the science really wasn't there at the time.”