They had no idea that their newborn little girl was having a seizure.
The doctor began asking questions, and one in particular would reveal problem: Does Annika’s diaper smell like maple syrup?
It did – in fact, her entire room carried the scent of maple syrup. The parents soon learned that Annika had Maple Syrup Urine Disease (MSUD), an extremely rare disorder that impacts the method in which the body breaks down amino acids.
About five babies out of every million are born with the medical condition, but Annika was one of them. Her parents were each carriers of the gene, which gave her a 1 in 4 chance of getting MSUD.
The first couple of days were hard, but the family soon gained some perspective on the situation.
“Annika would have flare ups,” her father said. “But she’d be there for four days and we’d get sent home. … Some of these kids don’t go home. To lose your mind over your situation is a slap in the face to the parents who have it worse than you.”
“That snapped us out of it,” he added.
When their son, Christian, was born a few years later, the parents were far more prepared for what might be coming. At first, the genetic test came back as negative, and they were thrilled with the news.
A few days later, though, the smell of maple syrup proved that non-diagnosis wrong. He did have MSUD.
Doctors brought up the possibility of a liver transplant – both for Annika and Christian. Their parents decided against it, as the thought of their children going under the operating table for that large of a procedure was not something they felt comfortable with. They hoped that Annika and Christian’s symptoms would improve over time.
Soon after, a night in the emergency room changed their minds.
Christian got sick one day, a common occurrence, so his father took him to the hospital. Normally, the medical staff would hook him up with an IV and give him a drop of sucrose – he’d get better hour-by-hour.
On this visit, he got worse. Christian began having seizures and the nurses grew concerned, prompting them to call for a doctor. His father looked down at his child, a little more than a year old. Christian’s eyes were open, but he wasn’t responding.
“He’s totally gone,” his father thought.
Christian was in a coma. The seizures were first – sending toxins to his brain. The coma was second. But before whatever was next could occur, the doctors saved Christian’s life. For his father, the decision regarding transplants had been quickly reversed.
Christian and Annika both had successful liver transplants, and there were just a few hurdles to overcome on their road to recovery.
The doctor was the first to mention the possibility of Make-A-Wish to Christian and Annika’s mother and father. Up until that point, they didn’t know they were eligible.
Upon receiving the news that they would each receive a wish, the kids became excited. Christian got his turn first. A big fan of the Disney® Pixar Cars franchise, he wished to go to Disneyland Resort to visit Lightning McQueen and the gang at Radiator Springs – located at Carsland in Disney California Adventure.
He and his family had a blast! They had done road trips to Disney World before, but this was the first time they had been on an airplane together.
The highlight of the wish was the visit to Carsland, particularly the group’s ride on Radiator Springs Racers. Christian, alongside his sister and father, rode in a race car – past the high mountainous region of Ornament Valley and all the way to the finish line.
“It was his dream come true,” his dad said.
Annika’s wish, which occurred about a year later, was a voyage at sea on the Disney Cruise Line. Even her parents felt like kids again, and the ship was full of excitement from the time the family stepped on board.
The group enjoyed the dining, the characters, the movies and Castaway Cay – Disney’s private island, a one-day destination of the cruise. The kids also loved AquaDuck, the “water coaster” that wraps around the Disney Dream ship.
Annika had a ball and today, both she and her brother are doing great.
“It’s rare to come across back-to-back life changing experiences like we did,” Annika and Christian’s father said. “There’s certain limitations you can’t provide for your kids because of the financial hurdles. Here’s a situation where you’re treated like the best of the best with two totally different scenarios.”
“We have so many memories,” he added.