Will the Weekend Warrior

Helping to bring awareness to the importance of Bone Marrow donation around the world, one country at a time.

A year ago today

A year ago today, I was having a perfectly normal sort of day. After a boring cross-country drive to Cambridge, I arrived at a customer’s house to do my job. It wasn’t often we do house visits: in this particular case the machine I was to fix belonged to a field salesman, so a house visit was necessary. It was going to be a busy day, so I arrived there early after having already visited another customer en route. He was a talkative guy, and I often found myself chatting away while doing my job. Today was no different.

 

On any normal day I do not answer my personal phone while working, out of professional courtesy. Close to finishing my job, I received a phone call from my mother – I declined and decided to wait the short while until I could return the call outside. A second and then a third call came through, so I excused myself into the hallway of the small flat to answer the phone.

 

What greeted me was a hauntingly unfamiliar sound: the choked-back tears of my usually mentally strong mum. My heart began to race as this unfamiliar exchange sent me into panic mode, as I listened to what she had to say. Not once did I expect the words I heard, not once did it even cross my mind.

 

Alice Byron passed away a year ago today, following a brief fight with an overnight infection that became the last straw for her in an aggressive fight with Leukaemia. Upon hearing this news, I felt numb – feeling like a caged animal in the ever-shrinking flat. I ended the call, and recouped all the composure my obliterated mentality could gather. I closed off the job with the customer verbally as my throat began to close, and made a hasty retreat towards the front door in a bid to retain my professional integrity.

 

I barely made it to the car before I broke down uncontrollably, incapable of processing the information I had just received. A phone call to work quickly excused me for the remainder of the day, and I set off back home to regroup. It was the longest 2 hour journey of my life, and in hindsight, not a journey I was fully capable of making. The thought that Alice’s friends would soon also be finding out about their loss one-by-one hit me like a train, and I could feel Matt’s pain before he even found out. I watched my eldest brother on Find Friends as his phone signal moved ever closer to changing my twin brothers’ life, having been given the task of telling him. I am not sure I could have.

 

The first few days were a blur of tears, hugs and posts online as the Facebook community found out. There are a hundred different stories of where we all were when we found out, every one as unassuming as mine. Hundreds of lives changed by the loss of a very special person.

 

Alice, like so many, was completely undeserving of the hand she was dealt. But in being given this course in life, I honestly do not believe I could have gained any more respect for the unparalleled grace and bravery that she showed in handling it. A year since she passed away and halfway through a year dedicated to her determination to do more, this is a testament to who Alice was:

 

Fundraising day at Ikea

Alice was diagnosed with Myelodysplastic Syndrome on the 30th June 2015, a rare blood disorder for someone at her young age. Having just finished her second year at uni, massive uncertainty was left as to whether her studies could continue. Determined to return for her final year, she not only moved back to Cardiff the second she could, but further signed up for ‘Cardiff Marrow’, mere days after returning in September 2015. Cardiff Marrow are a branch of UK Marrow, a university-based offshoot of Anthony Nolan. They fundraise, raise awareness of stem cell donation and give up vital study time to do all of these things around the university and local area. Alice was described by the committee as an absolute asset not only to Cardiff Marrow, but to the entire network of UK Marrow. She learned to sign individuals up to the register herself and inspired thousands more to be there in the first place. This tenacity and willingness to help, alongside her regular involvement at society events, earned her the National Volunteer of the Year Award at the UK Marrow AGM in October 2016.

 

Her determination to campaign did not stop there. Agreeing to interview with Kat Orman in early January 2016, she took to BBC Radio Oxford to answer questions on her own battles, her ongoing studies and her condition. Similarly, Cardiff University Radio further enjoyed her company as she spoke about the need for more donors on the bone marrow register, and coping with a condition while finishing a degree. Not once did she express a desire to campaign for her own benefit, only to potentially save the lives of others.

 

As a further testament to her relentless campaigning, she made this campaign video for MDS awareness in order to reach out to more people.

 

Balancing not only her vast array of extracurricular activities with her condition, Alice continued to finish her degree in English Literature. Despite her treatments and ill-health taking a toll on her attendance, putting her on a back foot in lectures, she worked tirelessly in what free time she had to keep up with her assignments and write a final year dissertation. Where most would apply for extenuating circumstances to help them, Alice refused to allow her ailment to grant her special treatment. Finishing her dissertation from a hospital bed, Alice was awarded a 2:1 in English Literature just three days before she passed away.

 

 

While most people her age would rightly struggle with the life-limiting concept of having a blood disorder, Alice directed her efforts into helping others who may be struggling mentally through a special overnight volunteer service called Nightline. Given the anonymity of the service, many of her university peers would not have been aware of this role, to which she lost many a good night’s sleep – all in aid of being a friendly ear to those who needed one.

 

This extended to everyone around her, not purely strangers. Not a single person in Alice’s life went ignored, every one of them heard and understood when they had problems of their own. Alice’s closest friends affirm that there was not a single occasion in which she had missed a gathering, or felt as though she put her own problems before theirs. To her, being a good friend was the most important thing – friends of Alice were friends for life.

Finally, Alice’s actions in her final year showed her to be the altruistic person she was. Upon being diagnosed with Leukaemia, she immediately sought to give away something she felt may better help someone else – her hair. Mere days later, she donated her long hair to the Little Princess Trust, determined to do it before she started her treatment.

 

Hair wasn’t enough though. In her will, many more benefitted from her generosity. The Little Princess Trust, the Haematology Unit at the Churchill Hospital in Oxford and Anthony Nolan all received large donations to further their work.

Brave. Uncompromising. Determined. Loyal. Unfailingly generous. Grief can make or break you, and Alice used her own to become larger than life. So when people ask me what keeps me going, what motivates me, how I do this every week – I find the answer to be but a simple question.

What would Alice do?

alicebyron.com

And to help further what Alice started: Donate to Anthony Nolan

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1 Comment

  1. Jonathan Byron 7th July 2017

    A beautiful piece Will. Thank you for this and everything that you have done and continue to do in her name. It means a great deal to us.

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