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I’m so proud of my Pearly Princess

We love to share stories of our young people’s amazing achievements. To date though, no-one has gone on to be a Princess…..until now! Gemma, mum to Daisy, who is now 22, explains all.

Like most parents, childhood liver disease wasn’t anything we had ever thought about. Daisy was 11 when she became ill. She was very tired, felt very unwell and lost weight with no obvious explanation. Looking back, we were really lucky to get a diagnosis so quickly. We were in our local hospital Chelsea & Westminster A&E Department with a very poorly Daisy and one of the A& E doctors who had spent time at Kings recognised her symptoms as autoimmune liver disease.

Although it was an undoubted relief to get a diagnosis, it was the start of a difficult few years not only for Daisy but for us as a family – Daisy is one of five. Doctors explained that Daisy’s condition could be treated with medication but getting her treatment right took a while. It meant lots of stays in hospital which meant Daisy missed a lot of school and one of us would be separated from the other children for spells, particularly difficult at the time as my youngest, Monty, was only three.

Discovering CLDF was a huge help. We realised there was much needed support available – not only for Daisy herself but for all of us. I distinctly recall David, the family officer at the time, who was endlessly patient and calm, and became a constant listening ear and source of knowledge. Knowing there was someone available to speak to who really understood meant a lot to me. And then of course there were the events! We went to family days, and we attended the conference. It was great to meet the CLDF team in person and also to meet other families and realise we weren’t alone in this. What I really liked, however, was the fact that we were all included because childhood liver disease definitely affects the whole family.

Daisy second right holding blue crown made friends at CLDF Talk Tell Transform

I feel Daisy really benefitted from CLDF Talk Tell Transform, when she was 16. She went away with a group of other young people, shared their stories, had some fun and made her own film. It was a brilliant experience, she made some good friends and even though they are all doing different things now, they are still in touch on social media and she loves keeping up with what they are all up to.

Despite missing lots of school, Daisy did well in her exams but decided against university. She works for a start-up company ‘Ask Mummy and Daddy’ close to where we live and is enjoying learning all aspects of the business. Health wise, she is good. She still gets tired but she takes her meds, she’s down to six monthly appointments and refuses to let her liver condition stop her from doing anything. In fact she’s just returned from back-packing around Thailand which she loved.

After receiving support from CLDF when we really needed it, we’re about to have the chance to give something back. As a London family, we’ve always been familiar with the tradition of Pearly Kings and Queens – it’s one which dates back to the 19th century. All the London boroughs have a Pearly King and Queen and I am at present a Pearly Consort and hopefully will take up the title of my local borough when I finish my training, making both my daughters, Pearly Princesses!

This means we will get invited to certain local events and can raise money for charity. Of course, my charity will be CLDF!

This year we took part in the London’s New Year’s Day parade. It was wonderful for my girls and I to wear our pearly outfits and take in the atmosphere and I felt particularly proud of Daisy, who has been through so much, to be able to enjoy an occasion like this.

Gemma (centre) is pictured with her daughters Daisy (right and Maud)

In the crowd on that day, I spotted a young mum with a baby whom I could see had jaundice. I rushed over to tell her about CLDF because I feel so strongly that every family affected by these conditions should access the support we had.

As a Londoner, I’m excited to be becoming Pearly Queen. To be able to raise funds and awareness for CLDF as a result really is an added bonus!

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