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We are very grateful to Sean Joyce’s parents, David Joyce and Sirpa Lajunen, who are bravely sharing his story to help raise awareness of Cholangiocarcinoma, a rare form of gut cancer in the bile ducts of the liver.

“Sean passed away on the 21st of March 2022 in Leuven Hospital in Belgium at the age of 31 years. He had been diagnosed with Cholangiocarcinoma in March 2021.

Sean had been a healthy child who at the age of 15 was diagnosed with ulcerative colitis with pancolitis. At 20, 3 weeks before his 21st birthday, he was diagnosed with Primary Sclerosing Cholangitis. Both Ulcerative colitis and PSC are auto-immune diseases. His diagnosis was made with blood tests, liver scan, and liver biopsy. His liver showed macronodular cirrhosis and intense inflammation.

Sean was very keen on sport and participated in rugby and athletics. He started cycling at age 10.

In 2014, Sean was interviewed for a newspaper clip in which he said that liver disease was a huge setback and made training difficult, he was always tired. His diagnosis of PSC was hard to deal with and was mentally stressful. If he did not get it sorted it could potentially lead to things like sclerosis, cancer, and a liver transplant. He wanted to be a professional cyclist from the time he was selected for the under 17 national cycling team at 16 years. He was even more confident with selections in the following 2 years.

Sean went to Belgium to further his career just before his 21st birthday. He rode for several different teams over the next couple of years. Whilst in Belgium, he met his partner, Joyce Berrier. He started working in a bike shop, Get Fixed, as a bike mechanic in 2019. Sean and Joyce had planned to buy a house and start a family, but the cancer diagnosis in March 2021 put an end to that.

He endured many diagnostic procedures and at least 20 rounds of chemotherapy. His condition caused clots in his lungs, a bowel obstruction and ascites. He was hospitalised in January 2022. Together with Michelle (Sean’s sister), we travelled to Belgium to be with Sean.”

Sirpa, being a registered nurse, spent 7 weeks in the same room as Sean, providing personal care. David and Michelle returned to New Zealand in mid-March and one week later, Sean lost his battle with cancer.

The bike shop where Sean had worked had ordered a special bike frame for him as a gift when he returned to work. Sadly, Sean never knew about this frame. Sean’s boss, Arne, gifted the frame to David and Sirpa so they could build the bike up and ride it around Lake Taupo as a memorial to Sean. The plan had been for Sean to recover and ride around the lake with David for what would be David’s 30th time around.

David has enlisted a group of his and Sean’s friends to ride around the lake together. Sirpa has enlisted a group of friends to ride the last 55km of the lake with her.

“The plan is that we will group together before the finish to ride in as one” said Sirpa. “Sean made a huge impact on all those he came into contact with. His family, his partner Joyce, his friends, and fellow athletes. If anyone deserved to live a full and healthy life, it was him. It was cruelly taken from him, and we will never know why.

He will forever live in our hearts and minds. We all love him so dearly.”

David and Sirpa will be fundraising with their participation in the 2022 BDO Lake Taupo Cycle Challenge in memory of Sean. If you would like to join them in fundraising or make a donation in support, you can do so here