The Filberg Festival will be collecting and recycling all empty drink containers this weekend to help the family of one of its regular vendors.
Troy Townsin writes kids’ books and has been an exhibitor at the festival for six years. His six-year-old daughter Lexi has Blau syndrome, a rare, degenerative condition that affects her joints, eyes, skin and organs. It is a combination of arthritis, sarcoidosis (in which abnormal collections of inflammatory cells form lumps) and uveitis (a form of eye inflammation). Osteoporosis is also another condition associated with it. Blau syndrome also affects her growth and immune system.
“There’s not a part of her that’s not affected,” says Townsin.
Lexi was diagnosed three years ago after originally being misdiagnosed. When she developed a rash, doctors took a biopsy and determined she had the disease.
“It’s just one of those ones they haven’t seen very often,” he says.
The family is based in Victoria, but Lexi’s mom Cheryl-Lynn Townsin (nee Murray) grew up in the Comox Valley and attended Vanier Secondary. Her mother Ingrid still lives in Royston, and the family continues to spend much time in the Valley.
For treatment, Lexi faces regular shots and eye drops, and despite all the tribulations his daughter faces, Townsin is amazed by how she copes with it all.
“She’s fun, she’s sweet,” he says. “She has dealt with pain as long as she can remember.”
The festival is rallying behind the Townsin family and donating all proceeds from empty drink containers toward their campaign for Blau syndrome research.
“It was just amazing when they said they want to reach out,” Townsin says.
The family has a non-profit organization set up to raise funds to find a cure for Lexi’s condition. People can also donate online, and Townsin will take donations at his booth at the Filberg Festival.
The disease is rare, with fewer than 200 known patients known around the world, though Townsin thinks there are more people out there. Already, they have found another person with it on Vancouver Island.
It has no cure, nor even an effective treatment, says Townsin. He adds that research development into the disease could yield benefits to the general population because the study of the mutated gene that causes Blau syndrome could help research into other genetic diseases.
For the proceeds, the Townsins have two goals. One is to put together a research symposium in 2020 for specialists from around the world to come to Vancouver Island to share their knowledge, as well as patients to come share their stories.
The second goal is to develop a patient registry to track the progression of the disease and build up case histories to assist with the research and development of treatment options.
You can follow Lexi and her dad on Facebook at https://www.facebook.com/memydadandblau/ and Instagram @memydadandblau. Townsin says they are planning to use social media to inform people about Blau syndrome and get a better sense of how many people are affected, once they get the registry set up.
“I think it’s one of those things that’s just been really under-diagnosed,” he says.