Emily and Heather's bloody long bike ride

On Sunday 26th May 2024, Emily & Heather cycled the FordRide London - Essex 100 ride, in one day.

This is in memory of Bill Payne, Emily's dad/Heather's grandad who passed away in March 2021.  We're hoping to raise money for two important causes which are very close to our hearts.

The two causes are: The Haemophilia Society, and the Haematology Unit at the Bristol Royal Infirmary (via the Bristol & Weston Hospitals charity).

We've each written more about why we're doing this, please see below:

Emily
My dad had haemophilia B (sometimes called Christmas Disease) which is a hereditary blood disorder.  It means that blood cannot clot easily, causing internal bleeding into joints and muscles which can be excruciatingly painful.  Treatments have come on leaps and bounds over the years, and sufferers today will receive preventative treatment meaning they may have very few bleeds, but this was not the case when my dad was younger and so for him it meant many hours of unbearable pain, bed rest and numerous transfusions of Factor 9 (the clotting factor missing from his blood).  I am a carrier of haemophilia B and have always known this, due to the way it is passed on.  Both of my daughters have recently found out that they are also carriers and it was this that inspired Heather to suggest that she and I take part in the ride.

I'm supporting The Haemophilia Society because:  they are a UK-wide charity started in 1950 for everyone affected by a bleeding disorder.  They were there for my dad for all of his life with much needed support and advice on how to manage his haemophilia.  They have also been a huge support during the infected blood scandal, the effects of which are still being felt throughout the haemophilia community, with many still dying as a result of contracting HIV and/or Hepatitis C from receiving contaminated blood products during the 1970s and 80s.  The subsequent inquiry into the scandal is now in progress; its final report was supposed to be published in March 2024 but at the time of writing this, it has now been pushed back to 20th May, just a few days before our bike ride.
**note added post bike-ride - the report was indeed published on 20th May, and highlighted the many failures that caused this tragedy to happen. I wish my dad and my uncle could’ve been alive to witness the acknowledgment that what happened to them and many many others was not an accident.

I'm supporting the Haematology Unit at the BRI because:  during the course of his life, my dad had many visits to the Bristol Royal Infirmary's haematology unit to receive treatments for his bleeds.  The wonderful doctors, nurses and support staff at the unit were like family to Dad and were always there for him, day or night, and we want to show our love and appreciation for the unfailing care they give to the local haemophilia community, including other members of my family over the years.

Emily says:  we've started training for the ride, and it's going to be really tough (those of you who know me, know I'm not the sporty type!), but my lovely dad had many hard times and struggles during his life and bore them all with patience and grace, and we hope to do him proud.  He was a kind, gentle, quiet man with a quick wit and a ready smile and laugh.  He was a wonderful dad who was always there for me.  Dad was a local councillor and was passionate about politics, both local and national, and was well-liked and respected by councillors from all parties across the political spectrum.  In later years, many of them supported the nomination to make him an Alderman and my mum and I were both there at the ceremony where they each in turn said so many nice things about him that we thought we might burst with pride.

This bike ride is for him and for the many haemophiliacs (and those with other bleeding disorders) and their families who deserve to have their stories told and their fight for justice recognised.

Heather
My mum and I are cycling in memory of my grandad Bill whom we lost in 2021.

I'm supporting the Haematology Unit at the BRI because:  The department is filled with wonderful doctors, nurses and support staff who helped my grandad receive the medical care he needed throughout his life.  Me and my family are so grateful for everything they did and we want to shine a light on their incredible work.

I'm supporting The Haemophilia Society because:  It is a fantastic organisation that supports and empowers people affected by haemophilia and a wide range of other bleeding disorders, helping them to understand their diagnosis, answering any questions they may have and aiding them in living life to their fullest.  My grandad was at one time the chairperson of the south west group and later in his life he was a trustee of the society and was a huge supporter of the work they do.

Heather says:  last summer I found out that I am a carrier of haemophilia B.  This has been a pivotal moment in my life.  Knowing that my future sons and daughters could be sufferers or carriers of haemophilia has made me want to make a difference for them.  
I also think this is so important in the wake of the infected blood scandal.  In the 1970s and 80s, thousands of people with bleeding disorders were given contaminated treatments containing HIV and/or Hepatitis C.  According to The Haemophilia Society's website, 3000 people have since died, and of the 1243 people who contracted HIV, less than 250 are still alive today.  My grandad was infected with Hepatitis C due to this.
A statutory public inquiry was opened in 2018.  Around 500 people who received contaminated blood products and others affected by the scandal have since died, and more will pass away before the inquiry comes to a close this year.  
I hope that my mum and I can bring attention to this in our own small way through our bike ride and educate others on the sheer injustice that people suffering from bleeding disorders and their families are facing.
Finally, I'm doing this to celebrate the life of my grandad.  He was a wonderful man who loved to care for others and despite all the challenges he faced in his life, including a brain haemorrhage among countless other bleeds, he never let them overcome him.  He was my inspiration, and I know he would be so proud of me and my mum if he could see what we are doing.  We are not cyclists by any means so this will be a massive challenge!

Emily and Heather say:  If you are able to make a donation, a heartfelt thank you on behalf of our two wonderful causes.  All donations are greatly appreciated and thank you so much for taking the time to read why this is so important to us.