It’s a strange story of an extraordinary young man, the cyst that changed his life and the community that helped get it back.
Curt Knippelberg was a typical small town kid. Born and raised in Lake Cowichan, he loved his family, hockey and all that the great outdoors in his backyard had to offer.
In Grade 6 the family moved to Duncan and life went on as usual. Always a passionate athlete, Curt set up a home gym funded by money he’d earned helping his dad on a roofing job. Soon after, he discovered his passion, Brazilian Jui Jitsu and began to train.
When he was 16, he began to experience symptoms that didn’t fit for a young, healthy, athletic teenager. There were headaches, issues with memory loss and loss of balance.
Doctors chalked it up to the after-effects of a couple of minor concussions suffered during his hockey career and advised the symptoms would eventually subside. Instead, his condition grew steadily got worse.
“I knew that there was something wrong,” said Curt. “We just had no idea what it was.”
At age 18, he was started on a neuro rehab program, still based on the idea his symptoms were concussion-related. But he and his condition just didn’t fit in with other people in the program. Something was just not right.
“I really pushed for an MRI and eventually got one. That’s when they found the cyst on the pineal gland in my brain,” said Knippelberg.
The pineal gland, located between the two hemispheres of the brain secretes crucial hormones such as melatonin which affects memory, emotions, as well as sense of smell. It is sometimes called “the third eye.”
The cause of symptomatic pineal cysts is unknown, and small ones are not uncommon. Much more rare, are the larger cysts that can cause seizures, vision abnormalities, and loss of consciousness as the cyst exerts more pressure on the brain.
In Canada, surgery to remove the cyst was eliminated as an option.
“They felt the risk wasn’t worth the gain. The way they looked at it, I appeared to be relatively healthy and able to function. I had a life,” said Knippelberg.” But for me, it had taken away my passion. I had to give up doing so many things with the headaches, memory stuff and dizziness and just never knowing what was going to happen next, or when.”
Knippelberg began to do research and found that surgery to remove the cyst was available in the United States, but it was extremely expensive. A cheaper option was to journey to India, a popular destination for “tourism surgery’ but there was still the question of where the money for the trip and surgery was going to come from. He began a fundraising campaign.
Laurie Johnson was a childhood friend of Curt’s mother, Rhonda (nee LaForge). The two had been best friends all through school in Lake Cowichan but as adults, had lost touch over the years.
“It was only by fluke that I came across a “Boogie for the Brain” post on Facebook. I randomly sent an email and said that I’d like to host a bottle drive for Curt and that changed my life for the next year and a half!” said Johnson. “We made $7,000!”
On Knippelberg’s website submitacyst.com a log of various fundraising events and strategies were unfolding. Johnson stepped up to the plate in a big way, organizing many events. In 2012, Curt and his mother Rhonda, made the trip to India for his life-changing surgery, but a cruel twist of fate was to dash their hopes of success.
“The night before I was set to have the surgery, the nurses in India went on strike. The doctors there felt it was far too risky to proceed with the back-up staff that they brought in,” said Knippelberg. “It was crushing, we had to turn around and come home and start all over again.”
The setback took a heavy toll on Curt’s team but for him, there was no giving up.
“We were all so down when they came back from India and he was the one who picked us up,” said Johnson.
The work began again as friends, family, community, businesses and organizations all came forward to help with events from bottle drives, silent auctions, “burger and a beer” nights at local pubs, dances and even Lake Cowichan Secondary School grads donating the proceeds of their annual fashion show to help Curt on his journey.
Tattoos to Train was one of Curt’s special fundraisers where people donating funds could have their names or initials tattooed on him as a permanent legacy of their gifts. Jory Helmes of Bully Boy Tattoos donated all the tattoo work.
“Curt was so positive through it all,” said Carol LaForge, Curt’s grandmother. “He’s never, ever wavered and he’s been so appreciative of the incredible support he’s been given.”
Finally, Curt’s dream has been realized. He underwent surgery in Australia to remove the cyst from his brain about a month ago and is now back home recuperating. His awe at the incredible outpouring of support that made this journey possible is evident by his sincere gratitude to all those who helped make it happen.
“I want to let everyone know just how appreciative I am of their support. That such positive caring could come out of something so negative. It’s been just amazing!”
Knippelberg is not out of the woods yet. His recovery will be a slow, measured process that will take time. About half his pineal gland was removed along with the cyst to ensure that there will be no reoccurrence. He is optimistic and eager to begin the next stage of his life as a whole, healthy person.
“I can never repay all the countless people who did this, so I plan to pay it forward once I’m healthy,” he said.
