From the moment he saw Brittni’s photo online to the first time he heard her voice over the phone, Daniel Petke knew that his now-wife, Brittni, was the girl he wanted to spend his life with. They hit it off over simple things like movies and pineapple pizza, but more than that, they found in the other a kindred spirit.

Petke soothes his wife, Brittni, as they wait for her headache to subside. Every day Brittni experiences severe headaches, which is the most common symptom of Chiari Malformation. Photo by Andrea Wong “At the core we’re so similar,” Petke said. “Things that we dealt with, that we struggled through and suffered from growing up, we just bonded really quickly, and we both had that same feeling immediately of ‘this is it.’ It didn’t take long to propose.”

But they were far from a perfect ending. Brittni often experienced pain in her head and had trouble balancing herself when she walked. It was something she had been dealing with since she was young. No one could identify what was wrong and in place of a diagnosis, Brittni was offered medication to ease the pain. However, her symptoms only worsened with time. Petke recalls when Brittni didn’t realize she had stepped on a piece of glass, but she hadn’t felt anything.

As nerve loss spread throughout Brittni’s body, Petke repeatedly brought her to the doctor, only to be met with the same inconclusive response. It wasn’t until five neurologists later in 2015 that they finally discovered the problem. Brittni was suffering from Chiari Malformation, an inborn defect that causes the brain to grow downwards into the spinal cord. Had they caught it earlier, when Brittni’s brain hadn’t fully developed, the defect could have been curable. But at 27 years old, her nerves were “too far gone”, and once again, Petke and Brittni were left without a solution.

“That was the hardest thing for us to hear,” Petke said. “They gave us some hope and then they took it away. That was crushing for us. That I think was a big push for me to want to do something.”

As Petke started to brainstorm ways to help raise awareness for Brittni’s condition, he remembered the inflatable dinosaur costume he wore to win a Halloween contest.Petke dances on the corner of Stephen Avenue during a Thursday afternoon. Photo by Andrea Wong

“Part of the reason I won the costume contest was because we were dancing around on stage, and that’s what everybody loved, and that kind of inspired the idea to take it out to the streets.”

After Petke got his busking license and printed information sheets about Chiari, he set off on his mission. The first day he was dancing at the Olympic Plaza, he met Nichola Hamilton and her 11-year-old daughter, Alora, who had also been diagnosed with chiari malformation. Hamilton had frequently sought treatment for Alora when she was a few months old, but similar to Brittni, there was not a lot of awareness around her illness.

“It was gut-wrenching,” Hamilton said. “It was like hitting your head against a concrete wall. What do I do now? I just watch my daughter die, and nobody’s doing anything because apparently it’s just a headache.”

When they finally got a C.T. scan that revealed chiari malformation, Hamilton was fortunate to find a doctor to perform a decompression surgery, which removes a bone from the back of the skull. However, she had been prepared to fly to Cuba as not many doctors in Canada were willing to do the operation.

This is a challenge Petke is currently facing. While surgery would not be able to cure Brittni, it would slow the defect’s progression. But, because of the high risk involved, Petke still has not found a doctor who will agree to the surgery.

“We’ve kind of lost a lot of hope right now,” Petke said. “But at least I can get the word out and get people thinking about it.”

Daniel Petke’s wife suffers from Chiari Malformation, but Petke is doing what he can to raise awareness as a dancing dinosaur. Produced by Andrea Wong

While Chiari Malformation is not well-known, it is not uncommon. According to the National Institute of Neurological Disorders and Stroke, the defect occurs in about one in a 1,000 births, though this number may even be higher.

“I don’t want other people to have to go through this without knowing what’s going on for so long. I want to help other people that are suffering from this. [I want] people to know they’re not alone,” Petke said.

Upon Hamilton’s suggestion, Petke has set up a GoFundMe page that has already raised $1,600. The money will be used to pay for Brittni’s medical expenses and hopefully a scooter to help Brittni with mobility. She currently depends on a walker to move around, but because of her muscle weakness, she often doesn’t have enough energy to leave the apartment.

Donations go towards paying for Brittni’s medication, which can cost more than $1,000 a month. Photo by Andrea Wong

Despite the discouragement of seeing Brittni struggle every day, Petke tries to remain positive. If he isn’t working or taking care of their five-year-old son, Petke sets out downtown to dance and talk about Chiari. But at the end of the day when Petke packs up his prehistoric costume and heads home, he does what he can to make Brittni comfortable and bring a smile to her face.

“When he makes supper just on a whim or he goes to a store and grabs me my favorite chips and my favorite drink and just surprises me, I love those moments,” Brittni said.

Petke’s dedication was in part inspired by his grandfather, who went to great measures to take care of his own ailing wife up until her deathbed. In their last conversation together, Petke’s grandfather told him to take good care of Brittni, and it is a promise he does not intend to break.

“When you love somebody, you take care of them. I’m only going to be here for her,” Petke said. “Her good spirit and happiness has really changed how I try to go about things. I try to stay strong for her. You can’t live with a warrior and not get any stronger.”

Petke takes a break after dancing for an hour. Photo by Andrea Wong

awong@cjournal.ca

Editor: Rosemary J. De Souza | rdesouza@cjournal.ca