When Airdrie mom Leilani got a phone call from the Starlight Children’s Foundation, that her nine-year-old daughter Emmie and the family had been selected for a luxury-laden train trip, Leilani said her daughter could hardly contain her excitement as she gleefully jumped up and down with pure joy. 

The Starlight foundation is an organization that facilitates both in-hospital and out-of-hospital trips for children and families of children who have medically complex conditions, making family vacations and getaways unattainable.

Emmie, whose last name is being withheld for privacy reasons, lives with a genetic disorder, Crouzon Syndrome. Those afflicted with Crouzon syndrome suffer from a premature fusion of skullbones. In Emmie's case, this has resulted in multiple major surgeries beginning when she was just 3 months old. The syndrome affects her facial appearance and has caused narrow breathing passages, a high palate, a recessed mid-face as well as dental misalignment and more. 

Leilani said that although the family is a part of the foundation, they initially weren't picked for the train through the Rocky Mountains organized in part by Rocky Mountaineer this year, but by a serendipitous twist of fate of another family cancelling, Emmie was chosen along with 15 other children to embark on the train trip. On October 5, the children and families were flown to Banff, where they boarded a train which would eventually make its way to Vancouver. 

"It was after the first day [on the train trip] and she [Emmie] sat back and just said, 'this is incredible. It's amazing to be with kids like me. I don't even feel shy," Leilani said. "Emmie got to help out the staff and she became an honorary staff member for the day. She helped the crew with service to the people."

For all her hard work, Emmie was gifted a Swarovski crystal star snowflake ornament, which her mother says is now her very favourite Christmas ornament and will be the first thing going on the family's Christmas tree this year. Leilani said because Emmie's condition affects her physical appearance, there have been times when Emmie has been the subject of stares and whispers, but because Emmie has grown up with her disability, she is not cognizant that she is any different.

"It's not easy when people are staring or making comments; that's tough for any kid, but the train was an amazing opportunity for her to be with other kids where she was just completely accepted, and could just be a kid and have fun," she said. "The train was incredible. It was luxurious and beautiful, but the friendships and the connections that were made, that's really the most beautiful part of the trip."

For two days, the kids on the train were treated to a whole host of entertaining activities, including games and prizes as well as caricature artists. At one point there was also a karaoke jam and a full-on dance party. Such activities, according to Brian Bringolf, the CEO of Starlight Canada are at the core of what the organization does. 

"Starlight endeavours to allow seriously ill children and their families to do the same things that we can do with our healthy children. So to be able to take these kids from their homes and fly them across the country, because a lot of these kids came from outside the province and get them on this beautiful train and treat them like movie stars are very, very special for them; that speaks volumes of what this trip meant for the children and how it makes them feel that much more special from this wonderful organization that basically normally caters to millionaires."

Bringolf who met Emmie on the train trip said her infectious playfulness and smile were hard to miss.

"It's really just the magic of Starlight and the innocence of children that we were able to see. for those two days, it's really a guiding example of what those kids are: they're engaging, they're not shy, they're just asking you a million and one questions.," Bringolf said. "As beautiful as the trip was and as beautiful as our country is, for me, the most enjoyable part of the ride was getting to know the other kids and their families."

Leilani agreed with Bringolf that her daughter, despite the numerous challenges she has been faced with in her short life, is cheerful, bright, and above all excited about life. And while the family's trip did have to come to an end, Emmie is now focusing on the next big thing: picking the perfect Halloween costume. Though her mom said she has bounced back and forth between different costume ideas, including being a ninja for Halloween, Emmie promptly told her mother that she is now thinking of dressing as a police officer, but her mother suspects that costume idea may change very soon. 

This is the second year in a row Rocky Mountaineer has generously donated this experience to Starlight Canada. Last October, the company welcomed 10 Starlight families with seriously ill children onboard the final train of the 2021 season on GoldLeaf service.
 

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