In the early days of Children’s Liver Disease Foundation, there were no online fundraising pages, or sharing of events on social media. Instead fundraising was largely regional and organised by different branches around the UK. One of the most successful was the West Sussex Branch. Brenda Higgins was involved from the beginning……..
Our son Andrew died on 21st May 1982 at the age of 16. He had been very keen on raising money for King’s College Hospital, where he had been a patient for many years. He would collect tin foil from far and wide, which would land up in our garage, sometimes being eaten by mice, as not everyone was very good at washing the food containers. We would then have to take them to our nearest scrap merchants to be weighed. On his next visit to King’s, he would present a cheque to Professor Mowat, who was his consultant. It was also here that we met Barry Barton.
The West Sussex Branch of what was then the Michael McGough Foundation, was formed on 16th September 1986. Robin Green had been appointed Southern Area Organiser and had approached me as he happened to live nearby and knew I had had a child with liver disease.
This I did with the help of four friends. I was Hon. Chairperson, Vivienne Ayres Hon. Treasurer, Mary Medhurst Hon. Minutes Secretary and Pola Flattery Hon. Fund Raising Secretary. We were later joined by two or three more friends. Lady Sarah Clutton, daughter of the Duke of Norfolk, kindly agreed to be our Hon. President and it is her we have to thank for allowing us the use of her barn for several very lucrative tea parties.
We began by arranging small events, such as jumble sales and raffling a quilt made by the local W.I. We also held a stall each year at the local village hall in the run up to Christmas. We had a choral evening in our local Parish Church and even a cycle ride from London to Littlehampton. This came about because Vivienne’s postman had done one and she persuaded him to help us organise it! On one occasion in the beginning, Robin Green made a plea in a national newspaper for old Christmas cards, with a view to making them into notepads to sell. He was snowed under, and Mary and I went to help him. We have a newspaper cutting of us in his garden surrounded by mailbags.
As our committee grew, we added fashion shows and tea parties with a speaker to our fundraising repertoire. Like our other events they were successful fundraisers but enjoyable occasions too.
The committee out in force collecting at Brighton Racecourse
In 2001, my husband had retired and we purchased an apartment in Spain. As we would be spending more time away. I felt it was time somebody else took over the Chair, and as Barbara, who had joined us some while before, and had a granddaughter with liver disease, it seemed natural that she should carry on. This she did with great enthusiasm.
I still served on the committee and very much enjoyed doing so. I think we were successful because we had a great committee who worked well together and who were willing to give up their time for such a good cause. Barbara and I were very fortunate in knowing family and friends who were willing to support us and, because we both had someone close with the disease, we wanted to give something back so that other youngsters would benefit.
I first heard about CLDF in 1990 when my granddaughter, Adderley, was diagnosed with biliary atresia. A representative from the charity would visit Kings College Hospital where Addy was being treated and provide my daughter, Clare with information and general support. A little while later, Clare and I went to a local fundraising event which Brenda had organised. We held our first coffee morning shortly afterwards and joined the committee in 1993. It was really rewarding to be a part of the branch and when Brenda wanted to step down as chair a few years’ later I was happy to take over.
We would put on about 10 to 15 events a year including silent auctions, musical soirees, murder mystery evenings, variety shows, cabaret and quiz nights and collections at various venues. The committee always had such super ideas and an amazing commitment to seeing them through. My favourite fundraiser, however, would have to be our pop-up shop.
We were very fortunate to know a local landlord who was willing to let us have a shop, completely free of charge, as and when an empty one became available. He also gave us garages in which to store the wonderful donations from our committee, family, friends and the general public as they came in, thus saving all of us from having to clutter up our own homes. We would run the shops once or twice a year for two to three weeks and it was so much fun as well as a real money spinner.
The shop was a particularly successful fundraiser
I did put a lot of time into fundraising but so did the rest of the Committee, it was fun and wonderful to see the money rolling in as it was greatly needed for CLDF.
In 2016, we came sadly to the conclusion that we would need to close our Branch. Many of us had husbands who were poorly and our members themselves were beginning to have health problems too. We were really proud, however that the Branch had raised over £236,000. I was able to carry on some informal fundraising over the next few years until my own husband became ill and I couldn’t give the time, and raised an additional £11,500.
I know that Brenda and I both agree that with an enthusiastic bunch of people, so much can be achieved and fundraising for a cause which is close to your heart is a really worthwhile experience.
Addy was eight and a half weeks old when she was diagnosed with biliary atresia. This was the first time I had heard of liver disease in children, and it was a massive shock.
It was at King’s College hospital that I was first introduced to CLDF by the specialist nurse who supplied me with literature explaining biliary atresia. She also told me about the charity and the work they did. There were notice boards on the ward with pictures of other children who had liver disease; it was reassuring to read the information and see we were not the only ones going through this.
I spent months in hospital with Addy, seeing lots of poorly babies, most of which arrived at Kings later than they should, with less chance of a good outcome. Many parents’ stories were the same – they had never heard of liver disease in babies and many, like myself, had gone to GPs who were unaware of the symptoms.
I learnt that early diagnosis, especially in biliary atresia, is the best way to prevent continued damage to the liver and avoid an early transplant. I also found out that if I had been born with biliary atresia I would not have survived, so progress had been made.
It was the fact that CLDF educates health professionals about childhood liver disease and funds research which prompted me to start supporting the charity. I have done so for all these years in the hope that one day a cure could be found or at least awareness can be raised so every child gets to a specialist centre as a matter of urgency.
As a young child my liver condition did not hugely affect me. It was only the hospital appointments I had for endoscopes for oesophageal varices and the fact I had medication each day which made me a bit different. When I was about ten, however, I started to deteriorate. I had portal hypertension, I couldn’t keep up with my peers, I had more time off school and was still having the endoscopies.
By the time I was 12 I was struggling to walk any distance, used a wheelchair at times and an oxygen machine at night. By this point I was being considered for my liver transplant, I had started to become really anxious about lots of things. All through the assessment I was petrified. I thought I was dying and spent so much of my time worrying. I used to write to my mum at bedtime to tell her how scared I was feeling, and I struggled to sleep.
I was 13 when I had my transplant and although medically it was a success, for which I am hugely grateful, I do think this was such a difficult age to go through this. I’ve often said to my mum over the years I would have not known much about it if I were younger! For me, the mental scars of the transplant were far worse than the physical to heal.
I was very aware of CLDF because of all the fundraising my mum and grandma did and I quite enjoyed helping my grandma out in the shop or at an event. But my personal situation was never something I wanted to discuss. The young people’s service in those days was not what it is now and I didn’t know many people in my situation but, to be honest, as my health got worse, I wanted to avoid hearing about, talking to or being around anything to do with liver disease or transplantation. I had so much fear I couldn’t bear to think about it.
One positive thing which came out of my condition was wanting to be a nurse. I would say both the positive and the negative experiences were factors in this decision. Oddly, I love the hospital environment and I love my job! I couldn’t imagine doing anything else now, even though this has not been an easy year with Covid as I’ve had to shield.
My health is now pretty good. I have had some minor blips but nothing that adjusting my medication hasn’t sorted with a little time. I am now nearly 18 years post-transplant, which is amazing and when I have met young people with liver conditions in my job I have tried to offer reassurance and support where I can.
Clare, Addy and Barbara, cut a cake to celebrate the 30th anniversary of CLDF with Catherine Arkley, who was Chief Executive of the charity at that time
To any young person who worries about their liver condition I completely understand as I was a worrier myself. But I would say talk about your worries, work them through and have trust in the professionals looking after you. I wasn’t honest enough about how I was feeling and that didn’t help me. You’re not alone, people really do want to help you, so let them.