A grieving family is using the sudden and tragic death of their son to fight back against the disease that took his life.
Xavier Aguirre was a Burnaby boy through and through. He attended Marlborough Elementary, then Moscrop Secondary before graduating from BCIT. His last car ride with his mother was to Burnaby Hospital, where it was discovered he had contracted a rare disease called amyloidosis. Just 19 days after learning he was ill, Xavier passed away in Vancouver General Hospital on July 16, 2020. He was 30 years old.
When Xavier’s sister Aja Aguirre found out her brother was sick, she flew home from the U.K., where she has been pursuing a soccer career. Aja got special permission to see her brother, heading straight to his bedside from the airport and straight back home again due to coronavirus (COVID-19) restrictions.
After Xavier’s death, Aja decided to do a bike ride in his honour near where she lives in the U.K. to raise money for amyloidosis research. The ride will start on July 10 and run until the one-year anniversary of her brother’s death on the 16th. The journey will cover 500 kilometres, culminating at the Warhammer World factory in Nottingham.
“When thinking of where to finish the journey, this made immediate sense to me. My brother bought his first Warhammer figures when he was 11 years old, with the money he made from his paper route, and their products have brought him and his friends so much joy over the years. The last time I ever got to see Xavier conscious was when he and my parents visited me at the end of April in 2019, and he was able to visit Warhammer World and do a tour there. It had been on his bucket list since long before I moved to England, and I am happy that he was able to have that experience,” Aja wrote on her fundraising page.
So far £3,607 of the £5,000 target has been reached. The money raised will go directly to fund research, mainly through the National Amyloidosis Center (NAC) in London, which conducts leading research specifically into amyloidosis. Funds will also be allocated to the Mayo Clinic in the United States, where all of Xavier's test results were sent.
The Amyloidosis Booklet written by the National Organization for Rare Disorders (NORD) broadly defines the disease as a protein folding disorder. These misfolded amyloid proteins bind together to form rigid, linear fibres that accumulate in our body’s organs and tissues.
NORD describes amyloidosis as a rare condition that is often overlooked. Each year, an estimated 50,000 people worldwide will become afflicted with the disease. Due to its rarity, health-care workers may not expect to see amyloidosis. It is also often missed due to its nonspecific symptoms like being tired or out of breath. It is very likely the actual prevalence of amyloidosis is greater than now recognized.
Fionna Aguirre, Xavier's mother, knows about the effects and rarity of amyloidosis firsthand.
"It's a very scary thing; I didn't even know about it until three weeks before my son died," she said.
Speaking to Aja’s fundraising efforts, Fionna says it makes her daughter proud and serves a goal they passionately share.
"We don't want this to happen to anybody else," she said. "The thing with this disease is, it's not curable. But people are surviving it now in the U.K. where there is more knowledge of it."
If you would like to help the cause but wish to keep your donations in Canada, check out the Canadian Amyloidosis Support Network. The network provides those recently diagnosed with the disease with information and access to a support network geared to optimize treatment.
