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Although many of our young people are aware that a liver transplant may be somewhere on the horizon, when that thought becomes a reality it can still be a shock. Gracie, 23, believes that talking is the only way to cope.

I was diagnosed with portal hypertension as a baby and doctors told my parents that a transplant was a possibility in the future. However, my liver condition didn’t affect me hugely until 2012 when, following an episode of severe dizziness and confusion, I was diagnosed with hepatic encephalopathy. I didn’t have a further episode for two years but when I did (it was like a mini stroke)- Dr McKiernan at Birmingham Children’s Hospital, put me on medication. He explained that though medication would work for a while, in the long term, other options would need to be considered.

That time came last December when, after I’d experienced a year of shocking memory problems, my consultant said she was going to speak to a transplant surgeon about going for assessment. For me, this was out of the blue and came as a massive shock. I’m the kind of person who likes to feel in control and the thought of this whole process made me feel powerless and out of control. I panicked and just wanted to shut myself away. It was my mum who suggested talking to CLDF. The charity has been there all my life and when Louise got in touch with me about Hive a couple of years ago, I thought it sounded a great idea and joined up. I’ve loved meeting other people this way and even met my boyfriend Josh through CLDF!

So, I took mum s’ advice, told Louise all about it and I’m very glad I did. Expressing how you feel to someone else really does help. Louise not only listened but encouraged me to talk to other Hive members. Many of them have been through transplant, so they really understand my worries, but also helped me see that they now have a better life because of it. Louise has also encouraged me to talk to Zoe, the psychologist at Birmingham, and she has been a great help too. If I didn’t have Louise and the friends I’ve made through CLDF, I wouldn’t feel able to face this.

I don’t know what the result of my assessment will be. I might be listed for transplant now or maybe I’ll be reviewed at a future date. But one thing I do know is that I won’t be trying to cope alone.

Support in education

With many children starting school or nursery or moving to a new school in the next few weeks, it’s important to feel that your child’s place of education understands their needs. CLDF’s education packs have been designed to support young people up to the age of 18 in any educational setting. As well as providing teachers and support staff with information about childhood liver disease and its implications for the child concerned, there is plenty of practical advice which will benefit both schools and parents. Specific packs are available for England, Scotland, Wales and Northern Ireland. If your child is starting a new school or college and you have not yet received your pack please request one at families@childliverdisease.org. “We had significant input from parents and teachers in putting together the packs and have had very positive feedback, ” says CLDF Head of Support, Michelle Wilkins. “We do appreciate that starting school can be an anxious time so would ask parents who have specific concerns to contact us. ”

Big thank you to our young fundraisers

Once again, our young people have done us proud. Whether they have a liver condition themselves, or are fundraising to support a sibling, they have navigated their way through this year’s restrictions to do what they can to support CLDF.

Ada’s fundraising grabs PM’s attention

There’s just no stopping six year-old Ada. She featured on these pages last year when she did the 2.6 mile challenge and raised an amazing £3940. Now she has gone one step – in fact many steps - further. In February this year Ada and her mum, Emma, decided to beat the lockdown blues and raise £1,000 for CLDF by asking children to run 20 miles that month. Well the call was certainly answered! Not only did 230 young runners from throughout the country join Ada in her challenge, but they helped her to smash her original target, raising an amazing £12,000! It was such a fantastic result that Ada attracted the attention of local and national media and even received a special Points of Light Award from the Prime Minister. The awards are given to inspirational volunteers who are making a difference in their communities. Ada could not receive the award in person but has an open invitation to visit the Prime Minister when she goes to London. We’ll be watching Ada – and let’s hope Boris has his running shoes on!

Fearne forgoes chocolate

Giving up chocolate for Lent is not an easy prospect for anyone, but when you’re an eight year old chocoholic, it’s especially tough.

Fearne, however, wanted to do something special for CLDF so took on the sponsored challenge. She was determined to see it through and resisted temptation even when her brother ate chocolate in front of her every day!

The result

- £100 raised for CLDF and Easter eggs which tasted better than ever. Well done Fearne!

Mia makes beautiful bracelets

Nine year old Mia decided to keep her herself busy during lockdown by making loom band bracelets. When friends and family saw the gorgeous designs she was creating, they started to put in orders, which gave Mia the bright idea of selling them for CLDF. In a matter of months, she had raised an amazing £370 for CLDF. A future fashion designer and a fantastic fundraiser, Mia, we’re so impressed!

In January this year, Nathan, 10, set himself the challenge of travelling the distance of Hadrian’s Wall (90 miles) either by walking, cycling, running or even roly polying within 30 days. He was joined in his challenge by sister, Layla, team-mates from Bedlington FC U11 Dragons and fellow pupils from Meadowdale Academy. The result – challenge completed on time and a fantastic £5,200 raised for CLDF. What a fantastic community effort you inspired Nathan!

Kayla brings in £1,000 for Big Yellow Friday

Twelve year old Kayla loves to put on an event for Big Yellow Friday but lockdown meant that wasn’t an option this year. So she organised a raffle which raised a fantastic £500 – an amount which was doubled by her generous gran, Ann.

“We also cut off 19 inches of Kayla’s hair and 12 inches of mine and donated it to the Little Princess Trust, raising £558 for CLDF, ” says mum Elaine.

“Kayla is determined to raise £10,000 for CLDF and she wasn’t going to let a

pandemic stand in her way. ”

Kayla, we salute you!

Big Yellow Friday is back!

Big Yellow Friday is the highlight of our fundraising calendar.

Sadly, schools were closed to most pupils on Big Yellow Friday this year, so we missed out on seeing your fabulous pictures of Wear Yellow Days and bake sales.

Next year, however, we’re planning to be back bigger than ever, so put Friday March 4th 2022 in your diary and stock up on the yellow food colouring and those lurid T shirts. It’s time to join Sooty once more for some Big Yellow fun!

Now, more than ever, your donation will have a real impact on the work we do to transform the lives of children and young people with liver disease. Simply fill in the details below and return this page with your cheque to CLDF, 36 Great Charles Street, Birmingham B3 3JY.

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Children's Liver Disease Foundation

36 Great Charles Street, Birmingham, B3 3JY 0121 212 3839 | email : info@childliverdisease.org

website : childliverdisease.org

Registered Charity Number : 1067331 (England & Wales): SCO44387 ( Scotland)