Sherwood Park family loses daughter to rare disease, fights for sister’s treatment

Halla Ahlefeld was feisty, loving and courageous in the face of a terminal diagnosis.

The 15-year-old Sherwood Park teen lost her battle with an extremely rare disorder, Labrune Syndrome, earlier this month.

The genetic disease is so uncommon, there are less than 100 recorded cases of the unpredictable degenerative disease that causes progressive calcification and cysts on the brain, leading to loss of brain function.

“Last year she was dancing, singing,” says Halla’s mom, Lindsey Switzer, “and then a year later she couldn’t say any words.”

But the pain of watching Halla’s decline, amplified knowing her older sister has the same disorder.

“It’s like there’s a time limit on my life right now.” 18-year-old Ayva Ahlefeld tells CityNews from her family home in Sherwood Park, “And I don’t know what’s going to happen.”

Ayva is now pleading for more time. While there is currently no known cure for disease, there is a drug that has the potential to slow the progression of the cysts.

The cancer drug Bevacizumab, commonly known as Avastin, has been used on Labrune patients in the United Kingdom.

Ayva’s medical team at the University of Alberta Hospital are ready to treat her with Avastin, but the drug is not covered for off label use by their insurance. The drug would need to be administered every two weeks, and costs $3,000 a dose.

“We tried to go through Blue Cross,” says Switzer, “Everything you could possibly think of and there’s just no funding for it, because it’s not the intended use of the drug. I guess there’s some liability.”

The family is now back to fundraising for the treatment. The drug had previously been approved for Halla, with a charity willing to pay half because her condition was considered palliative at the time.

But when Halla reached the point where any benefits from the drug would be overshadowed by the side effects in her decline health, those funds raised were re-directed into retrofitting their home to keep her comfortable in her final months.

For Ayva, it’s frustrating knowing the drug is there but she can’t access it.

“It’s crap,” saying bluntly, “Why don’t I get a chance? Why do some people get a chance, and other don’t?”

Her main reason for wanting more time? To make more memories for her, and for Halla.

“I’m basically what’s left of her legacy, so I need Avastin, to promote her legacy.”

For Switzer, blown away by both her daughter’s strength, saying Ayva told her “she wanted to do more things so when she meets Halla in heaven she could give her some stories, so they can update each other.”

Ayva has written and published a book through the Make-A-Wish foundation, and plans to use funds from ‘Inside Out; My Life With Labrune Syndrome’ for her treatment, along with funds raised through the families GoFundMe.