Xavier Aguirre was just 30 years old.
Over a two-year period, the Burnaby resident was tired for most of the time in addition to back pain and bloating.
In December 2019, his mom noticed something was off and encouraged him to see a doctor.
His sister, Aja, says the doctor told him he was a little overweight and needed to form better habits.
"He was 30, so they just sent him away," she said.
The next year, Xavier would pass away.
Aja says her brother had Amyloidosis, which occurs when abnormal proteins build up in organs and interfere with normal function.
Infected organs can include the heart, kidneys, liver, spleen, nervous system and digestive tract.
Symptoms can include swelling of the ankles and legs, severe fatigue and weakness, shortness of breath with minimal effort, an irregular heartbeat and more.
Xavier was diagnosed in July of 2020 and passed away roughly one week later on July 16.
Aja says Xavier technically died of a heart attack, but if he hadn’t been diagnosed the week before with Amyloidosis, they would have just classified his passing as heart failure.
She says their doctor told the family, that in his 39 years of practicing, he had never seen a case of it before Xavier’s.
Their dad had heard of the disease on the popular television show House where the diagnosis was somewhat common. One of the show's producers had lost someone close to them to Amyloidosis.
Treatments are available, but it was too little, too late by the time it was discovered he was suffering from the disease.
"That’s the thing that was kind of really painful for us afterwards," said Aja.
"Because obviously the way it happened with Xavier, none of us had heard of that disease. He got diagnosed and died a week later. It was so sudden and just brutal.
"We just thought: What is this horrible freaking disease?"
Aja lives in England and plays soccer. She had to return for preseason after her brother passed away and was understandably grieving.
"I didn’t really know how to deal with it."
She reached out to someone she noticed posting in an Amyloidosis support page after seeing he too struggled with the disease.
The man, named Mark, was the head of the Scottish support group and invited Aja to join a Zoom meeting with others that are affected by the disease.
"I found out that a lot of them have been living with it and if you catch it early enough, you can treat it. You can’t cure it but you can stop the amyloid proteins from being produced."
A day or two days after his passing, she also decided she was going do a bike ride in his honour.
"I don’t know why I thought bike ride," she explained.
"It just hit us all really hard. Like the week after he died, we weren’t really functional. We were fortunate there was a lot of people around us that would kind of bring us food and stuff because we weren’t cooking or anything but it just popped into my head to just do that [bike ride] and I thought Glasgow [Scottland] because my mom’s family is from Glasgow and I love in Nottingham, so I thought 'just do that.'"
In July 2021, Aja, alongside family and friends, rode 558 km from Glasgow, Scotland, to Nottingham, England, in seven days, finishing the ride on the day that Xavier passed away (July 16, 2020).
Aja was able to raise 11,000 British pounds for the first ride, smashing the original fundraising goal of 5,000 pounds.
After a major success last year, Aja and her team are undertaking another ride this year.
They began in Whistler on July 10 and will be finishing their ride in Burnaby on Saturday (July 16), stopping at Xavier’s university (BCIT) and his high school (Moscrop Secondary).
The ride will finish at the house they grew up in.
She set a fundraising goal for the 2022 ride of 1,000 pounds. As of this publication (July 13), 99 per cent of that goal has been met, according to a crowdfunding page.
Aja says she hopes people will advocate for themselves when something is wrong, even if they are turned away or brushed off.
"I know everyone’s overloaded right now," she said, referring to the doctor shortage throughout B.C.
"But people just get turned away all the time.
"If you don’t feel right, or if you’re like my mom, because she knew there was something wrong with my brother and he got turned away. She kept bringing him back to the hospital and they kept turning him away. So I mean, just push for that diagnosis and learn about other things because if anyone had mentioned that they could have tested for it quickly and they would have found out right away that he had it."
