When the Butt family of Bishop's Falls headed to Miami on March 28, their last trip as a family of four before their eldest son finishes post-secondary, they left with all the expectations of a picture-perfect vacation. What they experienced, however, was anything but picture-perfect. Roberta, Arch, and their children, Justin and Jessica, sat down with the Advertiser to tell their story, and to prove that the strength of family, and love, can conquer anything. This is the first in a three-part series to introduce you to the family, tell you of their journey, and why they never want to see the inside of a Miami hospital, ever again.
Nineteen-year-old Justin Butt has a handsome smile that would make your heart flutter - a tall man with dark hair, slender and strong in his appearance.
Sitting next to his mother in their living room on the family loveseat, you'd expect it's a smile the young man would reserve for a love interest, but today, it's all for Mom.
His long legs stretched over her lap, the pair sharing laughs and small talk.
On the matching, brown leather couch, Justin's sister Jessica leaves her ear-buds hanging outside her brightly coloured t-shirt while she spends an evening curled up next to Dad, talking sports and cracking jokes.
Their television set is turned down low so they can appreciate each other's company.
Here, in their house in Bishop's Falls, the Butts have created a home.
And while they haven't always had it handed to them on a silver platter, they've done with it the best they could.
"I've been with her since I was 17, and she's the love of my life," Arch said of his wife, Roberta.
He describes shoveling snow, working endlessly, day and night, to bring home diapers and formula for his young family. It's hard work and determination that has paid off for the Butts.
And throughout all of it – the good and the bad – they did it out of love for one another.
That's why when a trip of a lifetime fell in their lap, they knew they would make this one count. Justin, 19, is enrolled at the College of the North Atlantic in Grand Falls-Windsor. His parents know it's just a matter of time before he moves out to start his own life.
This trip would be their last hurrah.
They saved up their money, daydreamed in the weeks prior to leaving of the fun they'd have, and left on March 28 for the sunny south – Miami, Florida.
A wish granted
Justin and Jessica share the same stature as their mother, tall and slim.
Lucky to have gotten their Mom's traits, you might think.
"It's called Marfan syndrome," Roberta explains.
It's hereditary, a connective tissue disorder that can affect one's skeletal system, cardiovascular system, eyes and skin.
"There's a 50/50 chance (of passing it on)," Roberta said. "My Dad has it, my sister has it, her two kids have it, and my two kids have it."
Among the symptoms is scoliosis – which Roberta suffers from. Other symptoms include thin, narrow faces and flexible joints.
"Heart trouble is a big thing," Arch said.
The severity of Marfan syndrome can vary, however, and the Butts don't suffer quite as bad as others with the condition – showing no visible signs.
"I'm pretty great," Justin joked.
When the Children's Wish Foundation of Newfoundland and Labrador offered to grant a wish to Justin, the last year he'd be eligible, he said no.
And again.
In fact, Justin said no three times before he finally decided to accept his wish – to take part in a three-day, WWE Wrestlemania event in Miami – with a goal of schmoozing and shaking hands with some of his childhood heroes.
"This opportunity came, and we were thrilled! Finally, the family vacation we wanted," Roberta said.
And a family vacation they were getting. The Butts weren't going alone – they'd travel with Roberta's sister Kim Stuckless of Point Leamington and her family. Justin's love of wrestling runs in the family, and Alex, Stuckless' daughter, was also approved for a trip through Children's Wish to head to Miami for the event.
The family unit headed out in the big city of Miami, eager to meet their favourite stars, and see them perform live in the ring.
Back of the line
"There was 78,000 people at the event," Arch described.
In the 30-plus degree heat of the sunshine state, donning their Children's Wish T-shirts and buttons, the family showed up for day one of Wrestlemania activities.
After spending much time discussing the trip with representatives of the foundation, Arch thought he knew exactly how this might play out.
"We were told if you wear the shirts, wear the badges, everything showing you were from Children's Wish, they'd push you along," he said.
And in a sea of nearly 80,000 wrestling fans, picking out sick children wasn't that easy – unless you were visibly ill, Roberta said.
"(Children in wheelchairs) were brought right to the front of the line," she said.
Justin and his family were told they'd have to wait.
They waited for hours, from one line-up to the next.
"He never got to meet any of the wrestlers he wanted to see," Arch said, adding staff at the event even asked Justin not to take any photos with the performers.
That isn't what they expected – or the Children's Wish Foundation, who put the effort into making the trip a memorable one.
When the family returned for the "grand finale," the big wrestling show, they got even more of a run-around.
More long line-ups, moving from gate to gate, waiting for somebody to take the time to show them where they could sit.
"This was...all expected to come through. They paid for everything, and expected all of this to happen," Arch said.
Hours later, after the event had already started, after being sent here, there and everywhere – they finally got their seats – at the very top of the arena, behind a corner post.
Not exactly the VIP tickets Arch thought the family had.
"The whole time we were there, all we could see was the big post...all we done was watch the wrestling on the screen, and there were five or six young (men) behind us, obviously drinking and screaming," he said.
The family tells the story cautiously, one they don't want misconstrued.
"(They) never got nothing," Roberta said.
"I got the tickets, I seen how much the tickets were. I seen how much it cost (Children's Wish) to put Justin in (all) access. It was a nice bit of money. I truly believe they got ripped off."
But by then, Sunday, the day of the big show, Arch, Justin and Jessica had bigger things on their mind. Roberta was missing the one thing they traveled so far to see.
The nightmare
It was the Saturday morning of their trip.
The family of four woke up together in their fancy, top-of-the-line hotel, as arranged by Children's Wish.
"I have my heart checked every year," Roberta said of her Marfan syndrome. "I see the eye doctor every year because they're afraid of the disconnected lens...but I showed no signs that my aorta was bad."
The aorta, the main blood vessel in your heart, is known to stretch or become weak with the syndrome.
That Saturday morning, when Roberta woke up, she felt off.
"I put my two feet on the floor, and you can just imagine and surge of electricity just going right up through you, and I just fell to the ground...I felt it everywhere, and it was killing me, and honestly, I knew it was killing me."
That's the last thing Roberta truly remembers of her perfect, family vacation.
See Monday's edition of the Advertiser for the second installment.
