Weʼre raising £10,000 to fund research into the causes and treatment of Amyloidosis; a rare disease for which early intervention is crucial
- Nottingham, UK
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Hi everyone, my name is Aja Aguirre and I am 29 years old. I grew up in Burnaby, BC in Canada, where I've spent most of my life. In 2011 I moved to the U.S. to play football (soccer) at Arkansas State University, and then in 2016 I relocated to the UK in order to pursue playing my sport as a career. I currently reside in Nottingham, where I play for Nottingham Forest Women. As such, I've spent the majority of my adult life away from my home and my family, which had never been overly problematic, aside from the occasional bouts of homesickness. Before I can speak about the cause that I am looking to raise money for, I would like to first tell you all about my brother Xavier Aguirre. Xavier was born in August 1989. He was exactly two years and eighty-five days older than me. Growing up, I'd always said I was closer with my younger brother Kyan, as he is only one year and eight months younger than me - which doesn't really seem like all that big a difference in comparison. But the truth is, we were all very close in different ways. While I would say that, overall, I spent more time with Kyan, I probably spoke to Xavier much more - particularly when I moved away for university. As kids we all did everything together. Having three of us was a perfect amount for games and activities, and we spent a lot of time with all of our cousins on both sides of the family as well. My relationship with my brothers was such that, as we grew older, we didn't feel the need to communicate with each other 24/7. We were never one of those families that constantly said "I love you" or acted overly affectionate. We always knew that we were loved and that we had a huge amount of love for each other, and we generally didn't express it all the time with words. Xavier was the exception to this; he would never hesitate in telling people that he loved them. He wouldn't make a big deal out of it, but he would always make a point to say it whenever we parted ways, as well as give you a big bear hug. This is something that he carried with him throughout his entire life, and a behaviour that I knew him for.
Flash forward to the year 2020. Last year was undoubtedly the worst year many of us have experienced in our lives. The pandemic brought the start of a massive decline of quality of life for a lot of people, and for myself and my family there were other events happening at the same time that blindsided all of us and changed our lives horribly, forever. Sitting down and attempting to write down the events of last summer is something that I've been actively trying to do for the last 3-4 months. But every time I get the idea in my head to start writing, I'm suddenly not capable of doing it. Putting it into words brings back every feeling that I've had over the almost 8 months since it happened. But having made a promise to myself to do this, I am going to do my best to relay what happened, and the events that led to this new reality we are all faced with.
July 16th, 2020. This is the day that my brother Xavier Aguirre left us and this world behind. Xavier's passing was sudden, unexpected, and harsh. For these reasons, it's very difficult for me to put the sequence of events into words. I still struggle to believe that something like this could ever happen - especially to someone like my brother Xavier. I will start by explaining how I became aware of the circumstances that would eventually lead to his death. My involvement began at 6:43pm on June 27th, 2020. I received a video call on Facebook Messenger from my Mum. I didn't think anything of it as she tends to call me a lot, so I stopped what I was doing and answered the call. However, it was not my mum on the other end of the call. Instead, I was greeted by my dad's face. This isn't exactly unusual either, except I noted that it was strange that he was calling from her account, and also that it was out of the blue (when we video chat he tends to message me beforehand). So right away my mind jumped to worst case scenarios. I was worried that he was going to tell me there had been a death in the family, or something along those lines. I would never in a million years have imagined he was going to say what he did say. Aja, your brother is sick. Those are the five words that he opened with after I had answered the phone laughing and asked him why he was calling me from mum's account. Confusion. Panic. What do you mean he's sick?
He went on to tell me that Xavier was actually currently in the hospital. He had been in the hospital for four days, and had previously been admitted earlier in the month as well. His organs were shutting down on him - specifically his kidneys and his liver. He was bloated and full of liquid, and had not been able to use the toilet in over a week. The doctors didn't know what was wrong with him, and were still trying to figure out the cause. In the middle of a pandemic, it was the worst time to be in the hospital. He wasn't allowed visitors, and my parents weren't able to see him for the first eight days that he was at the hospital. My dad then told me that they weren't planning on telling me because they didn't want me to worry, but after a few days they decided that I should probably know. I didn't realise at the time how important this decision would become, and in hindsight am so thankful for it.
For the next two weeks I was able to speak to Xavier over Whatsapp and keep in touch with him about how things were progressing. From June 25 to July 10, he was tested and treated at Burnaby General Hospital, and the Royal Columbian in New Westminster. He was declining rapidly and at the time they still did not have a diagnosis. Xavier was weak and so ill, but he kept such a positive attitude throughout. He would even send me memes while he was laid up in his hospital bed, trying to make light of the situation he was in. After some confusion with timings, he was able to have a liver biopsy done at the RCH. With the result they were able to finally come to a diagnosis: Amyloidosis. None of us had ever heard of this disease, and of course we immediately began to google what it was. It didn't sound very promising. It was looking like his best option to survive it was going to be a liver transplant and potentially some rounds of chemotherapy. Of course we did not know at that time exactly how far it had already progressed in him, as it was all so new to everyone. On Wednesday July 14, I received a video call a few hours after midnight. It was my dad, and when I opened the video he was in tears and slightly hysteric. He told me that Xavier had a heart attack that morning and was on life support barely clinging on. He was not expected to make it through the night. It was at that point that I completely broke down. My partner Luke was with me, and after trying to calm me a bit he helped me start a plan on getting me back home to be with my brother.
I booked the next available flight home to Canada, which happened to be from Heathrow early the next morning. I left on the bus from Nottingham at 4am, and was on the plane en route to Vancouver by midday. The journey felt like the longest time, and I spent the entire time praying he would still be there when I arrived in Canada. I landed at the Vancouver airport at 2:30pm, and was picked up by my cousin Jacob. Due to Covid-19 restrictions, I was expected to go directly from the airport to my place of quarantine without stopping. However, the hospital had filled out paperwork that granted me access to see Xavier. I was allowed to see him under the condition that I came directly there and nobody was to be in the room with me, and after leaving, to go directly home.
When I walked into the room, the sight was shocking. Xavier was in the bed hooked up to all these different machines, and he was unconscious. His body was completely bloated and swollen, and he had bruises everywhere. His skin had developed a horrible yellow tinge due to the lack of function in his liver and kidneys. I spent the next few hours beside him, holding his hand and speaking to him in hopes that he would hear me and fight through. After some time I was told that I needed to leave to go home, and that I would not be allowed to return unless things took a turn for the worst. So myself and my younger brother Kyan went home and stayed up most of the night waiting in limbo and hoping for the best.
The following day, Kyan got a call from my parents saying that they were going to come home and have a shower, and that we were allowed to go back to the hospital. Although I had been told the day before that a call back meant it was worst case scenario, at the time I didn't piece together the implication of this. We arrived at the hospital and I immediately went to his bedside, where I sat with him until the doctors came in and told me that they needed to speak to my parents and see us all in a side room. When my parents returned, they joined Kyan and I to speak to the three doctors. They told us that Xaviers organs were not strong enough to come back and sustain themselves, and that they had been increasing the amount of life support drugs into him just to keep ticking. We were going to have to pull the plug on him. It wasn't presented as a choice, as there was no other option. His organs simply couldn't keep him alive any longer. They allowed us our final moments with him, where we said our last goodbyes and played him some music that he likely couldn't hear. When they finally pulled the plug at exactly 8pm, he lasted less than a minute until his heart stopped beating. We were left with nothing more to do but weep. Just 19 days after learning he was ill, my brother Xavier had passed away. He was 30 years old.
Just to give a bit of a background on what amyloidosis is, I will include an exerpt from the Amyloidosis Booklet, which was written by NORD (National Organization for Rare Disorders): "Broadly speaking, amyloidosis (pronounced ‘am-uh-loydoh-sis’) is one class in a growing list of protein folding disorders. While there are many distinct types of amyloidosis, in all cases the misfolded proteins, called amyloid (meaning ‘starch-like’), take on a particular shape that makes it difficult for the body to break down. Because of this misfolding, the amyloid proteins bind together to form rigid, linear fibers (or fibrils) that accumulate in our body’s organs and tissues. Depending on where the amyloid builds up, such as in the kidney, heart and nerves, different symptoms and potentially life-threatening conditions become manifest. While amyloidosis has been known since the 19th century, it is only within the last few decades that our understanding of it has matured. Presently, there are over 25 different proteins that have been identified as contributing to amyloidosis. Additional types of precursor proteins that can lead to amyloid formation continue to be discovered through ongoing research. Certainly, amyloidosis is a rare condition and often overlooked. Each year, an estimated 50,000 people worldwide will become afflicted with the disease, with more than 3,000 people being diagnosed in North America alone. This is about 1/5 of the incidence of multiple myeloma, and of similar incidence to that of Hodgkin’s disease or chronic myelogenous leukemia. Because of its rarity, medical students and physicians may not expect to see amyloidosis in their practice. Moreover, because the condition’s nonspecific, ever-worsening symptoms (e.g., being tired or out of breath) may be mistaken for more common problems of lung and cardiovascular disease, it is very likely that the actual prevalence of amyloidosis is greater than now recognized. It is imperative for clinicians and pathologists to consider amyloidosis as part of their differential diagnosis. Given the unique staining and spectroscopic properties of amyloid proteins, it is a simple matter to test for the disease. Early, accurate diagnosis is essential for patients to benefit from new treatments that are available to improve and extend life."
Losing my brother has been the most traumatic thing I have ever experienced. It was so sudden, and so unfair, and in the wake of all that has happened we have suffered tremendously trying to fathom his absence from this world. The day after he passed, I made a decision to do a bike ride in his honour in order to raise money for Amyloidosis research. From July 10th to July 16th, I will be cycling from Glasgow to Nottingham. The Journey will be just over 500km, not including detours for stopping to sleep. I would like to conclude the bike ride at the Warhammer World factory here 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.
In regards to where the money from this fundraiser will be going, we have agreed as a family that we would like all the funds to go directly towards research. Having joined an Amyloidosis support group and meeting many people that are currently living with the disease, we have come across a recurring theme. Most of them only found out that they had Amyloidosis through a complete stroke of luck, or a case of "right place at the right time." After what happened to Xavier, I was convinced that this disease was always deadly, and not treatable. But it appears that if it is detected in time, it is in fact treatable. And while the prognosis is still not ideal, it gives me hope that there is a chance that with further research into treatments and early detection, there may one day be a cure for this horrible disease. My goal is to contribute to that outcome, and help prevent this happening to other families so that they don't have to go through what we went through.
The majority of donations will go to the National Amyloidosis Center (NAC) in London, as it is a leading research center that is specifically for Amyloidosis. We will also allocate some of it to the Mayo Clinic in the United States, as that is where all of Xavier's test results were sent to, and it is also a leading research center. The Canadian Amyloidosis Support Network (CASN) was also a thought to us, as Xavier was a born and bred Canadian. However, as it is not strictly a research organization, the NAC and the Mayo Clinic appear to be the most viable options. This fundraising page will stay live from now until after the bike journey concludes, on the one year anniversary of losing Xavier. At that point I will post the donations to the organizations we have chosen. I will be updating you all on this page as well as on other social media platforms for the duration of this effort, including training updates and ultimately the donation receipts to the organizations we have chosen.
Thank you all for your support, and for reading this post. I hope that this is just the first step in a successful effort towards finding effective, early intervention and treatment for Amyloidosis.
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- 2 months ago
Aja Aguirre2 months ago
Hi everyone, apologies for the lack of updates the last few weeks; as stated on the Facebook page, I have been struggling a bit again recently so I took a bit of time for myself. But today, we were back at it with a nice scenic bike ride, which was just under 40km in total. As always, thank you for your continued support, and please continue to share this page and donate where possible. Look to the Facebook page “Amyloidosis Awareness Journey: Xavier’s Legacy” for more detailed updates. Much love ❣️
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- 2 months ago
Aja Aguirre2 months ago
Just a quick update for you all.. I’m honestly just blown away by the support we’ve received on this. Just over £3000 raised in the first 3 days! What! It is so appreciated, and I can’t thank all of you enough. This month is Amyloidosis awareness month, and I will be posting some info on this on the Facebook page later today when I’m off work. There are a couple events globally that take place every year, including something called “light up the night for amyloidosis.” Stay tuned to hear about that and how you can get involved! xx
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- 2 months ago
Aja Aguirre2 months ago
It's been just under two days since this went live, and I'm absolutely overwhelmed at the response so far! We are already almost halfway to our target. Thank you all so much for your support, it means so much to my family and I, and to Xavier's memory. March is Amyloidosis Awareness Month - I will create a designated page to talk a bit more about the specifics of the disease and give more of a timeline of exactly what happened to Xavier so that you can all see the impact this disease can have if not discovered early. Again thank you so much <3
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Aja Aguirre started crowdfunding
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May 12, 2021
May 4, 2021
Best of Luck with the cycle guys. Such a great cause and Xavier will be very proud of you all.
Apr 30, 2021
Apr 29, 2021
Lots of luck ! And sending love x
Apr 29, 2021
Amazing charity. Good luck Aja!
Apr 28, 2021
Best of luck with the bike ride Aja xx
Apr 28, 2021
Let’s go beyond $10,000 💜💜💜
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