Lexi Townsin, shown with her brother, Felix, (wearing a protective mask) had a rare condition called Blau syndrome. Royal Roads University took an active role in gathering research and funding in the search for a cure. (Contributed photo)

Greater Victoria girl, 6, dies after battling rare genetic syndrome

Lexi Townsin is described as a charismatic girl who loved to sing

After battling a rare genetic condition, Greater Victoria’s Lexi Townsin died last week at the age of six.

Lexi was diagnosed with juvenile arthritis on her first birthday, a diagnosis which became more complex a few years later when her parents – Troy and Cheryl-Lynn Townsin – discovered Lexi actually had a rare genetic condition called Blau Syndrome. It is a degenerative condition that affected Lexi’s joints, eyes, skin and organs.

The syndrome meant Lexi lived with constant pain as her joints and tendons were inflamed and sore. Her immune system was not effective and there was a threat that she could lose her vision.

READ ALSO: Arts fest in Comox collects empties to fund Victoria vendor’s charity

But her condition didn’t get in the way of her being a charismatic young girl who melted hearts and loved to sing. In September, Lexi also started grade one at Ecole John Stubbs where she went to kindergarten.

An Oct. 20 Facebook post from Lexi’s family shared the news of her death. A post from two days earlier said she had been airlifted to the BC Children’s Hospital in Vancouver.

“She was the strongest person we have ever known and she lit up the room as soon as she walked in the door,” the post from her family says. “Our hearts are in a million pieces, but the one thing that keeps us breathing is knowing that she was so loved by so many.”

Troy Townsin writes children’s books and relies on craft fairs that he exhibits at in the coming months. Another post on behalf of Townsin calls for staff who could sell his books for him. He is looking for help in various cities in Western Canada but will be needing individuals in Victoria from Dec. 6 to 8.

Those that are interested in helping out are being asked to reach out on the Facebook page, “Me, my Dad and Blau.”

A GoFundMe page has also been set up to raise funds for the Townsin family.

READ ALSO: Royal Roads takes active role in search for cure to rare disease

shalu.mehta@goldstreamgazette.com


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