For a Dauphin family facing two serious medical conditions, surprises are not usually met with glee.
It was almost too good to be true, the Brown family found themselves thinking during their free trip to Pittsburgh to meet NHL superstar Sidney Crosby, made possible by the Make-A-Wish Foundation.
"For once, the surprises were fantastic, and that’s when we realized, we’re not used to those," shared mother Marli Brown.
The international non-profit, which grants wishes to kids with life-threatening illnesses, hatched a trip for eight-year-old Olivia Brown that became more fantasy-like as their adventure unraveled.
First, they were unexpectedly gifted a heap of Pittsburgh Penguins merchandise at the Winnipeg hotel they stayed that first night.
Then there was their arrival at Pittsburgh airport, where their greeter asked if everybody was ready to meet the Penguins captain.
This statement confused Marli. She thought only Olivia and one parent could meet Crosby.
"They said, ‘Oh no, we wouldn’t bring you all the way out here without the whole family being able to go,’" Marli said. "So that was when my son did a little celebration dance, and so did Olivia, she knew that was going to be something she could share with us."
Accommodations, travel, entertainment and food — it was all covered for the Brown family, a much-needed reprieve from the worry of a terminal illness.
Olivia was only three years old when she started getting sick. For years, numerous doctors were stumped.
It wasn’t until they were referred to a specialist out of province that the appropriate diagnosis was produced. Olivia was diagnosed three years ago with a hypermobile type of Ehlers-Danlos Syndrome, a systemic connective tissue disorder resulting in severe pain, overly flexible joints and ‘holes’ in her veins and arteries. She was also diagnosed with mitochondrial disease, which has the potential to cause debilitating physical, developmental and cognitive disabilities.
Together, these conditions are terminal for Olivia.
While she was being assessed, it was discovered her mother has a milder form of Ehlers Danlos Syndrome. Marli was also diagnosed with Dercum’s Disease. Symptoms of the latter debilitating condition are similar to the progression of ALS. Her life expectancy is five to seven years.
The past couple years, clearly, have been traumatic.
But knowing the diagnoses and obstacles the family faces is like receiving a crystal ball, Marli explained.
"We have a flaming sign flashing in front of us, saying, ‘Use every moment like it’s your last,’" she said.
The Brown family has taken that understanding to heart.
Around the time of Olivia’s diagnosis, the Make-A-Wish Foundation wanted to make a dream of hers come true.
Six years old then, Olivia narrowed her priorities down to three: visiting the United States, going to a hotel with her family and meeting Sidney Crosby.
"She very much wanted to meet this guy who was the brand (of Timbits hockey). When you’re on a colouring page, you are cool," Marli chuckled.
The trip was finalized last December, with Olivia and her mother, father Kerry, brother Landon, 12, and sister Sophie, 4, eventually waiting outside the Penguins dressing room for Crosby.
When he arrived, he spent at least 20 minutes with the family taking pictures, answering questions and gifting Olivia with a signed jersey.
And he said he’d do his best to score a goal for her.
Hours later as Olivia and her family watched the Dec. 20 tilt against the New York Rangers from a suite, Crosby was a man of his word — scoring the first goal of the game, six minutes into the first period.
They were even more thrilled by Crosby’s gesture while the game winded down.
A stranger walked into their suite and gave Olivia the stick Crosby used to score the game’s first goal. He signed the stick for Olivia and wanted her to keep it.
"He didn’t really even have to think about us," said Marli, floored by the gift.
Meeting Sid the Kid made Olivia’s Grade 3 classmates at Smith-Jackson Ukrainian Bilingual School in Dauphin pretty jealous.
"No one in my class saw Sidney Crosby and they’re excited that I got to see Sidney Crosby," she said.
Normally chatty, Olivia was momentarily star-struck meeting the hockey star, her mother said. But her nerves calmed enough to ask some hard-hitting questions, like what is Crosby’s favourite meal before a game and why girls cannot play in the NHL? Crosby didn’t have an answer to that last question.
Marli said the whole trip "refilled all of our tanks" ahead of the medical battles to come.
"Make-A-Wish really took it to that next level," Marli said. "It’s going to be something which my kids talk about all the time. When they grow up, they’re going to ask what are they going to do for Make-A-Wish now?"
A GoFundMe campaign was established late last year to help the family with medical costs. The page is at www.gofundme.com/brown-mazurkewich-medical-fund.
» Twitter: @ianfroese