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)

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


Like us on Facebook and follow us on Twitter

Just Posted

Flowers and candles were laid on the driveway of the Weber home, where Kerri Weber was found dead in November 2020. (Black Press Media file photo)
Langford man to stand trial for death of his wife last November

Ken Weber is charged with second-degree murder of his wife, Kerri Weber

Police dog Obi assisted in an arrest Tuesday night after a man reportedly damaged a Victoria restaurant with a large steel beam. (Courtesy of VicPD)
Police dog called in after Victoria restaurant damaged with steel beam

Suspect reportedly entered restaurant and started damaging walls

Police dog Hitch helped arrest a man who had reportedly threatened the security guards of a Victoria shopping centre with a knife on June 15. (Photo courtesy of VicPD)
Man with knife arrested after reportedly threatening Bay Centre security guards

The K9 unit’s police dog, Hitch, was deployed to assist with the arrest

Kidspace, which took over the YMCA-YWCA childcare centre at Eagle Creek Village, plans to reopen the Y’s fitness centre as the Eagle Creek Athletic Club in September. (Photo courtesy of Kidpsace)
Former Y fitness centre in View Royal aims to reopen in September

Kidspace taking over both the gym and the childcare facility at Eagle Creek Village

GardenWorks nursery in Oak Bay at its home until August. (Black Press Media file photo)
GardenWorks puts down new roots in Oak Bay this summer

Nursery shifts down The Avenue to fill former fitness studio space

Maxwell Johnson is seen in Bella Bella, B.C., in an undated photo. The Indigenous man from British Columbia has filed complaints with the B.C. Human Rights Tribunal and the Canadian Human Rights Commission after he and his granddaughter were handcuffed when they tried to open a bank account. THE CANADIAN PRESS/HO-Heiltsuk Nation, Damien Gillis, *MANDATORY CREDIT*
VIDEO: Chiefs join human rights case of Indigenous man handcuffed by police in B.C. bank

Maxwell Johnson said he wants change, not just words, from Vancouver police

The discovery of a missing woman’s body in Nanaimo earlier this month is now being treated as homicide, say Nanaimo RCMP. (File photo)
Discovery of woman’s body in downtown Nanaimo now being investigated as a homicide

Amy Watts was found dead near Albert Street and Victoria Crescent on June 3

People line up to get their COVID-19 vaccine at a vaccination centre, Thursday, June 10, 2021 in Montreal. THE CANADIAN PRESS/Ryan Remiorz
Vaccines, low COVID case counts increase Father’s Day hope, but risk is still there

Expert says people will have to do their own risk calculus before popping in on Papa

B.C. Premier John Horgan listens as Finance Minister Selina Robinson presents the province’s latest budget, April 20, 2021. The budget projects $19 billion in deficits over three years. (Hansard TV)
B.C. government budget balloons, beyond COVID-19 response

Provincial payroll up 104,000 positions, $10 billion since 2017

Ocean debris is shown on Long Beach in Tofino, B.C. on April, 18, 2012. THE CANADIAN PRESS/Jonathan Hayward
Shoreline cleanup finds COVID-related trash increased during height of the pandemic

Great Canadian Shoreline Cleanup reports litter from single-use food packaging nearly doubled

Doctor David Vallejo and his fiancee Doctor Mavelin Bonilla hold photos of themselves working, as they kiss at their home in Quito, Ecuador, Wednesday, June 9, 2021. Doctor Vallejo and Doctor Bonilla suspended their wedding in order to tend to COVID-19 patients and in the process Vallejo got sick himself with the disease, ending up in an ICU for several days. (AP Photo/Dolores Ochoa)
Love, sacrifice and surviving COVID-19: one couple’s story

COVID hits Ecuadorian doctors who delayed wedding to treat sick

The Tsow-Tun Le Lum Society, which has been operating a treatment centre on land leased from the Nanoose First Nation for 35 years (pictured), has begun a fundraising campaign to open a new centre near Duncan. (Tsow-Tun Le Lum Society photo)
New residential school healing centre to be built near Duncan

$5-million Indigenous treatment centre will help survivors of residential schools heal

Two Lotto Max tickets sold on Vancouver Island were winners, though nobody won the $70-million jackpot in Tuesday’s draw. (BCLC image)
Vancouver Island lottery players win $1 million and $500,000 in Lotto Max draw

$1 million ticket sold in Campbell River, $500,000 ticket sold in Nanaimo

St. Joseph's Mission site is located about six kilometres from Williams Lake First Nation. (Photo submitted)
Williams Lake First Nation to search residential school site for unmarked graves

St. Joseph’s Mission Indian Residential School operated from 1886 to 1981

Most Read