A Sherwood Park teen has launched a fundraising campaign for research into a disease that afflicts her, her younger sister, and only an estimated 30 other people in the world.
Fourteen-year-old Ayva Switzer began having seizures when she was just two weeks old. Doctors first thought she had epilepsy.
But then her sister, Halla, was born, and began having the same seizures.
The sisters were eventually diagnosed with Labrune Syndrome, a rare, terminal disease that causes progressive calcification and cysts on their brains. The condition impacts both physical and cognitive abilities.
The girls are two of about 30 people ever diagnosed with Labrune Syndrome.
“One day you wake up and Halla can't walk, or Ayva has a seizure, or Halla's gone cross eyed and she's got a cyst in her brain that needs to be operated on,” their father, Cameron Ahlefeld, said.
“It’s like playing Battleship,” added their mother, Lindsey Switzer. “It’s the best way to describe it to someone because we never know where it’s going to hit.”
Last week, Ayva was motivated to take action: “I had a seizure in my upstairs bathroom,” the teen said.
“She said, ‘I need to do something, Mom. I can’t just let this continue to happen,’” her mother recalled.
“I said, ‘Ok. What do we do? How do I help you? I’ll do anything.’”
The pair launched a GoFundMe campaign to raise money for Labrune research.
More than $3,600 of a $10,000 goal has been raised so far.
“It made me feel empowered,” Ayva told CTV News.
She’s also in the process of making custom shirts, while sister Halla is selling handmade decorative rocks.
Their hope is to contribute to research that will one day change the lives of another family.
“I don’t really know what’s going to happen in five years… I try really hard to take this by the horns and make life something to be worth living,” Lindsey said.
With files from Regan Hasegawa
