The Plight of the 4,000 Calorie Diet
Chefs with Hart rallies Toronto’s top chefs in the fight against intestinal failure.
It’s a quiet Sunday morning and we’re in the back room of Buca Osteria & Enoteca, where Rob Gentile and David Marcelli carefully direct their small army of chefs on the finer art of cavatelli-making. This is where some of the city’s best pasta is made. And today, it’s being made by an elite team of expertly-trained kids, aged ten and under.
This is not their first rodeo; our band of special little chefs were previously cooking up a storm at Sugo earlier in March with Conor Joerin and Leandro Baldassare. They are just a few names from the impressive roster of Toronto’s most notorious culinary heavyweights that are part of the Chefs with Hart community, from where our future pastaios hail.
The children of Chefs with Hart are a remarkable lot; bright, focused, resilient, and brave - led by 10 year-old SickKids Ambassador Hartley Bernier - the organization’s mission is to raise awareness for intestinal failure. A disease that these kids know too well.
Hartley has Hirschsprung’s Disease and was born missing part of his large intestine. Since birth, Hartley has undergone 17 surgeries and countless days at SickKids. He has a stoma connected to a colostomy bag and still requires intravenous nutrition, though much less now than as an infant. His parents, Daniel and Ashley, have become experts in the intricacies of Hartley’s care, doubling up on their parenting duties as at-home nurses.
“Intestinal failure generally means that you have way less intestine than anybody else,” explains Daniel. As such, children with intestinal failure absorb significantly less nutrients than the average person, needing extremely high-calorie, specially-tailored diets. In Hartley’s case, only an estimated 50% of what he eats gets absorbed, which forces him to maintain a 4,000-calorie a day diet. This need for an abundance of food plays a principal role in the survival of those who suffer from intestinal failure; and serves as the foundation for how Chefs with Hart educates the public and raises funds.
Having volunteered at countless SickKids events from a very young age, the idea to create Chefs with Hart was seeded shortly after one of Hart’s surgeries, when he asked his dad very frankly why there weren’t any events for kids with intestinal failure.
“After Hartley asked me that super heavy question,” Daniel recalled, “I had a meeting with his surgeon at Home of the Brave. [...] We didn't necessarily have a food focus at the time, or we didn't really know what we were going to do. And as we were there, Nate [Middleton, then Head Chef of Home of the Brave, now at Petty Cash] said to me: ‘Hey, some of the guys are talking about how we want to do something charitable, we don't know exactly what to do.’ And I [said], ‘Dude, that's what I'm meeting with this doctor about literally right now.’ [...] So it was kind of birthed from there.”
Nate Middleton is the original chef of Chefs with Hart. He and Daniel grew up playing hockey together in their native Stratford. After he left for Toronto, they had lost touch, but reconnected soon after Hartley was born. Nate’s been a strong presence ever since. It’s easy to see that Uncle Nate and Hartley share a special bond. “Hartley's amazing. I always feel better after I hang out with him,” says Nate.
Nate brought together friends Jon Hamilton (Executive Chef of La Carnita and Sweet Jesus) and Kris Schlotzhauer (owner of AO Pasta, then at Enoteca Sociale) to create an exclusive off-menu cone for Chefs with Hart’s first event at Sweet Jesus. The event was a great success, selling a record number of cones in a day.
It wasn’t long before Chefs with Hart picked up momentum, with Nate actively enlisting other prominent Toronto chefs - namely Beast’s Scott Vivian and 416 Snack Bar’s Dusty Galagher - to participate in events such as Pizza Parties, that have now become a tradition for the organization.
Today, the list of chefs that have joined the Chefs with Hart community has grown exponentially from its humble beginnings, with many now reaching out to Daniel and Ashley to find out how they can help. There’s also a tremendous amount of mutual support between the chefs involved with the organization. Prior to the event at Buca, Conor Joerin met with David Marcelli and the Bernier family to speak extensively about his own experience hosting Chefs with Hart at Sugo, offering advice - a symbolic passing of the torch. “I think it’s just really rewarding for everyone involved,” Conor related.
In little over two years, Chefs with Hart has raised close to $60,000 for the GIFT Program and shows no signs of slowing down. If anything, with their unwavering determination and contagious positivity, the Bernier family seems poised to realize their dream in the not-so-distant future: to make Chefs with Hart into a full-blown charitable organization. “It’d be cool if it were really big and we could have offices,” Hartley muses.
An unlikely fantasy for a 10 year-old, but if it hasn’t been made clear yet; Hartley is hardly ordinary. An exemplary older brother to younger siblings Hudson and Sully, who are ever present and supportive, Hartley displays a level of confidence and maturity that is far beyond his years, and perhaps even mine. In the face of unfathomable adversity, he chooses to not only fight for himself and his family, but for others, lending his strength and grace.
“I just want to see him with the opportunity to get on more platforms, to keep growing with his public speaking,” says Nate. “Because I think at the speed that he's going on right now, [...] by the time he is a teenager, he's gonna be such a good public motivational speaker. I think he's already making a difference.”
After the last of the cavatelli is sent to the kitchen for preparation, the families gather in the dining room. The kids’ table fills up in no time as our little chefs wait with anticipation to taste the fruits of their labour, happily plated and served by Chefs Rob and David.
As I pick up my plate of cavatelli enrobed in a heavenly tomato sauce, I can’t help but smile to myself as I notice the perfect imperfection of it all. The cavatelli is in a variety of sizes and shapes, some softer, some chewier, all made with utmost love and care.
Being part of a Chefs with Hart event is humbling to say the least. While we learned a lot about intestinal failure and its severe impact on the lives of those affected, the most important thing we’ve taken away is that the unrelenting support of a community can have an even greater impact. Chefs with Hart, through their events and hard work, helps these kids just be kids: playful, curious, and creative. But also, by teaching these kids how to make and celebrate good food, they empower them to take control of their disease and to thrive in the best possible way. And that is the best gift anyone can give.
With that, I leave you with the only question worth asking: where do I sign up?
Support Chefs with Hart at the following events and promotions:
Now until August 4, 2019: Buca Promotion
Buca will be donating $4 from each Bigoli pasta dish ordered from their Buca on King dinner menu to the GIFT program.
July 29, 2019:
Chefs with Hart + Cowbell: Huron County Shingdig
August 11, 2019:
Eventmrkt + Chefs with Hart: Hometown III
OR DONATE HERE.
Words by Kimberley Kwo. Photos by Alex Tsang and Nick Wong.