An Airdrie girl who lives with a rare genetic disorder recently embarked on the Rocky Mountaineer train trip of a lifetime, thanks to Starlight Children’s Foundation – a nonprofit organization founded in the U.S.
Nine-year-old Emmie was diagnosed as a baby with Crouzon Syndrome, which is a genetic disorder characterized by the premature fusion of certain skull bones, preventing the normal growth of the skull. She was recently selected along with 15 other seriously and chronically ill children from across Canada to partake in the train trip from Oct. 5 to 6.
According to, Brian Bringolf, CEO of Starlight Canada, the organization is part of a worldwide non-profit started 40 years ago by a movie producer named Peter Samuelson and actress Emma Samms, who was inspired by her eight-year-old brother’s death from aplastic anemia.
“We help over 30,000 kids a month across Canada,” Bringolf said of the Canadian branch of the organization. “We do everything from wish granting to in-hospital pediatric programs.
“We just make the magic happen – really, anything and everything that there is to do to put a smile on a child’s face. That's what we’re all about.”
Beginning last year, the organization partnered with Rocky Mountaineer to provide families across the country with a once-in-a-lifetime trip through the Rocky Mountains. Last October, the company selected 10 families to hop on board the final train of the 2021 season on GoldLeaf service.
This year’s trip welcomed 16 families on a train ride beginning in Banff, Alberta, stopping for a night in Kamloops, B.C., and ending in Vancouver, B.C.
“Our friends at the Rocky Mountaineer donated a gold leaf car completely to Starlight to bring families from across the country together,” Bringolf said of the experience.
He added the organization flew families in from various locations across Canada, including Granby, Laval, Montreal, Calgary, Burnaby, Edmonton, Surrey, Kitchener, Toronto, Odessa, Airdrie and more. Thanks to Air Canada Foundation, the airline tickets were provided to the families for free.
“We stayed at a beautiful [hotel] in downtown Banff and then we hopped on board the Rocky Mountaineer and simply had the trip of a lifetime,” he added.
“You cannot describe how magical that ride is for anybody, let alone if you’re a nine-year-old girl that suffers through everything that beautiful Emmie suffers through.”
According to a Starlight press release, Emmie’s syndrome affects her facial appearance and has caused narrow breathing passages, a high palate, a recessed mid-face, dental misalignment, and other issues.
The condition has resulted in multiple major surgeries and trips to the hospital, beginning at three months old.
The young girl also uses a bi-pap machine at night due to severe sleep apnea and frequently attends doctor appointments, follow-ups, and faces the potential for future surgery and treatment.
“[Emmie is] just an incredible, brave girl. She doesn’t even talk about her illness. She doesn’t register that she’s got this disability,” Bringolf said.
He added Emmie was eager to interact with Rocky Mountaineer staff and to assist with servicing customers on the train ride. To reward her for her work, the staff even presented Emmie with a Swarovski crystal gift and named her an honorary train member for her help with fulfilling food and drink orders.
“It was really just a magical moment,” Bringolf said of the presentation.
“I’ve been blessed to be working at Starlight for over 25 years now, and this was one of the best experiences I’ve ever had, not only for myself seeing the beautiful Rockies, but seeing all these kids like Emmie having a wish of a lifetime [granted] thanks to our friends at the Rocky Mountaineer.”
He added the trip is something that should be on everyone’s bucket list and remarked positively on the service Rocky Mountaineer provides customers.
“You’re living in a fairy tale the whole time and that’s what Starlight is all about, trying to give these magical moments to these kids that go through so much,” he said, adding Emmie is a remarkable little girl who has been through a lot in her nine years.
“Visibly you can see that she has a disability, and a lot of people whisper and stare, and then you get on this beautiful [train] where you have 15 other kids that have similar illnesses and disabilities and now, you’re not being stared at – [you’re] just having fun.”
The two-day journey is aimed at helping the children connect with peers while taking time to find happiness through joy, laughter, and relaxation outside of the hospital.
The trip is unique in that it gives families from across the country who share similar experiences a chance to meet and interact, according to Bringolf.
“The parents get to talk about their trials and tribulations because of the difficulties they have due to their children’s various illnesses,” he said.
He added Emmie and her friends got the chance to just be kids and run around the train, playing with Starlight’s own resident superhero Captain Starlight, and enjoying in-cabin entertainment including a caricature artist.
In addition to the fun and games, families are treated to a view of a lifetime as they pass through the picturesque Rocky Mountains.
“You get these beautiful glass-domed cars that you sit in, and you can just overlook our beautiful province and then going into British Columbia as well,” Bringolf said.
Once the kids depart the train, they are rewarded with a stay at a luxury hotel, a DoorDash dinner, and a good night’s sleep, he added.
According to Emmie’s mom Leilani, her daughter was ecstatic when she found out she would be participating in the train ride.
“She was jumping up and down, she was very excited about it,” Leilani said. “We had been really looking forward and hoping that we would get the chance to go. It’s a once-in-a-lifetime incredible experience, so we were super grateful when we got the call.”
Leilani added the trip allowed Emmie and her family to create memories together they will cherish for the rest of their lives.
“Having the chance to see our beautiful country from this luxurious train was breathtaking, but the real beauty for me came from friendships and connections that were made on board,” she said.
“It really felt like everybody came together as a family. The kids had a blast. There were endless memories that I know we'll cherish forever.”
To maintain the privacy of Emmie and her family, Starlight has requested only first names are published in this article.