We are all so sad to have lost such an incredible, shining man.  Alex was more than a wonderful, son, brother, husband, uncle, nephew, grandson, cousin, colleague and friend.  He was, truly, a gentle man. 

I have lost more than my husband, I have lost my best friend, lover and partner in crime.  My confidant, advisor and personal comedian! I know that you all, like me, want to do exactly what Alex said he wanted us all to do when he knew that his illness was terminal.  

Alex had very clear ideas about his funeral etc. and one of these was that he wished for everyone to make a donation to The British Liver Trust.  It doesn't matter how small - whatever you can afford is fine, every little helps! 

Alex, as many of you know, had an auto-immunity disorder (his immune system attacked itself, primarily his liver) called 'Primary Sclerosing Cholangitis', or 'PSC', which causes scarring to the liver, particularly to the bile ducts.  This scarring can cause all sorts of complications, including but not limited to liver cancer or cancer of the bile ducts.  Some people with PSC live into old age but most are killed by these kinds of complications, usually in middle age.  This does not mean, however, that younger people like Alex with PSC are exempt from these complications.  PSC is a rare disorder, but there are many other disorders like PSC which also cause liver disease.  It is a sad fact that The British Liver Trust has to face the stigma of liver disease being caused by alcohol misuse.  Disorders like Alex's, contraction of the various strands of Hepatitis, diabetes and obesity are all causes that come above alcohol misuse.  Children also get liver disease.  

The liver is the second largest organ in the body and performs over 500 functions.  You cannot survive without a healthy liver.  However, operating on the liver is extremely difficult and risky and liver transplants are hard to come by.  Liver transplants cannot be given to patients with liver cancer.  Liver cancer is nigh-on impossible to spot, especially cancer of the bile ducts (what Alex had) and kills very, very fast.  Liver disease kills more than diabetes and road accidents put together, and it is the only major cause of death still increasing year-on-year.

Alex was astonishing in how he handled his illness.  The PSC caused bile to build up in his body on more than one occasion over the years, which caused him to become extremely jaundiced (yellow skin and eyes), fatigued and caused him to experience extreme itching (classed as a type of pain) and loss of appetite, resulting in weight loss.  The months leading up to his cancer diagnosis, before he was given a drain for his bile, were horrific as we tried to continue our life with him so exhausted and in so much pain, itching and not eating.  Alex was highly aware that research into PSC and other causes of liver disease is so desperately needed, and it was his utmost wish to help the British Liver Trust (which he always took an interest in and kept up-to-date with) in life and, especially, in his memory. 

**I have stayed in touch with the manager of fundraising at the BLT and recently the BLT has secured funding for a project with the Royal College of GPs.  The money raised here is ring-fenced to directly support this work. BLT are going to be working with them to create training materials and tools for GPs to spot earlier signs of liver damage, and better care for patients like Alex. It will cost around £25,000 in the first year with bigger costs in years 2 & 3, with all of our fundraising we can ensure it happens.  I know this is something Alex would be extremely supportive of.  

I'd just like to bring to everyone's attention, if you haven't realised already, that Gift Aid isn't taken into account on the page totaliser.  For instance, Alex's gift of £3000 from his will was actually £3750 and all the other bits of gift aid from everyone adds up.  Thank you so much.

You may be interested to know that Alex also left gifts of equal amounts to two other charities; Wateraid and the Child'si Foundation.  

Wateraid help supply clean water and sanitation to people in desperate need all over the world, enabling children (especially girls) to go to school, empowering communities and saving lives from completely preventable diseases.  Clean water and sanitation is the first building block in escaping poverty, and Alex felt very strongly about this.  

The Child'si foundation is Blue Sky Fostering (Alex's workplace)'s very own charity, of which Alex was the chair of the fundraising committee.  Child'si help to find safe, healthy and loving foster homes for abandoned babies and children in Uganda, where previously there has not been a culture of fostering due to traditional views on the importance of blood-line.  Child'si are at the forefront of changing attitudes there, saving and caring for the most vulnerable children who desperately need homes.  Again, something Alex deeply cared about.  £3000 will bring clean water and sanitation to many, many communities.  £3000 will pay for good social workers and rescue and home many abandoned children.  Many people will live, many girls will be educated, many women will be empowered, many children will find homes - all because of our amazing Alex. I have since had a 'Thank you' letter from Child'si who say that they're going to name their next arrival after Alex and update me on his progress, which is adorable.  I will keep you all posted. 

If you would like to make a small donation to Wateraid, you can do so here: https://www.wateraid.org/uk/donate/header/donate

If you would like to make a small donation to Child'si, you can send a cheque to this address: 

Caxton House, Packhams Hill, Rotherfield, East Sussex TN6 3HU

Many thanks to everyone who has donated and supported this fundraising endeavour so far - it really does mean the world.  Alex would be absolutely thrilled to see the amount raised so far, and so deeply touched to know that he was so loved.  We were very blessed to know so many amazing people.  

We need to keep this going, to support the project with the Royal College of GPs.  So, please do continue to support us in whatever ways you can, however small.  There is a quiz coming up, and there'll be more...!

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