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This is part of who we are

Six year old Ada has become a familiar face to many of our supporters as she has joined her parents, Emma and Mick in their fantastic fundraising campaign for CLDF. Here, Emma explains how and why it all came about. 

Everything seemed fine when Ada was born, and we were soon discharged home with our perfect little bundle. She was still jaundiced at four weeks, but as a first- time mum, I thought this was a new baby thing and it would pass. She had seen numerous medical professionals during those four weeks and none of them mentioned her jaundice, so this just backed up my theory.  

Call it mother’s intuition but when Ada was about four and a half weeks old, I did start to get concerned about her colour, so I did what they tell you not to do and consulted Dr Google. After typing in ‘prolonged jaundice’ the wonderful Children’s Liver Disease Foundation popped up and to my horror, revealed that baby jaundice certainly was something to worry about at this stage, especially as Ada was showing other signs of liver disease (pale stools, dark urine, generally unsettled) but these were things that as a first-time mum, I didn’t realise were abnormal. Armed with this information, I booked an urgent GP appointment and refused to leave without a referral. That same evening, blood tests revealed that Ada was in fact very poorly.    

After what seemed like millions of blood tests and scans, we were given the dreaded diagnosis of biliary atresia and told that Ada needed emergency and life-saving surgery to try and restore bile flow and save her liver. The doctors explained that this Kasai procedure only had a 60% success rate, but the odds were good for Ada as her diagnosis was early. 

Ada’s Kasai procedure was a success but it proved a difficult time for Emma  

So we handed our perfect girl over to her amazing surgeon and all we could do was wait and hope and pray. Her time in theatre was the longest and darkest seven hours of my life and the pain I was in emotionally was immeasurable. The only source of hope was the CLDF representative who took time out to come and sit with us and offer us stories of hope, telling us about children who had the same condition as Ada who were living life to the full. I cannot begin to explain just how much this helped us as a family in what really was our darkest hour. 

Our prayers were answered, Ada’s operation was a success, and she began to thrive, but my mental health was suffering. I needed to do something constructive, so I started fundraising for CLDF. I set up a fundraising page, set an initial target of £500 and met it within a couple of hours. This gave me a real buzz and, I have to admit, it’s quite addictive. 

That was the beginning of new passion for me, and I discovered I had a knack for fundraising. Here was my opportunity to bring something positive out of a negative situation. 

Over the past six years Mick and I, together with our family and friends, have done all manner of fundraising – everything from good old fashioned collection boxes in local shops to the London Marathon, the Three Peaks challenge, abseiling, sky diving and even a live performance of The Full Monty! Our enthusiasm must be infectious because now Ada joins in too. To her it’s completely normal and when she sees anyone out running, she assumes they are fundraising for CLDF! 

Ada’s success at fundraising at such a young age is something we’re very proud of – it’s caught the attention of the national press; she’s received an award from the Prime Minister and will even be featuring in a book to be published next year about inspirational children. It’s lovely for her to have that recognition but that’s not why we do this. 

Ada now joins in with her parents’ fundraising 

We do it because CLDF have continued to be there for us, introducing us to other families in the same boat and organising events for us to get together with these families and for Ada to meet other children with ‘shark bites’ like hers. They are always on the end of the phone to offer us support and continue to be invaluable for us. 

And although Ada’s operation was a success, she still has liver disease and is likely to need a transplant one day. I want CLDF to always be there for her during the ups and downs of her journey, so I have made it my mission to raise as much money as possible for this wonderful charity and try and give something back to them. 

We’re thrilled that we have raised over £63,000 to date but I can’t imagine not doing this and have plenty more ideas up my sleeve. Fundraising has become a part of who we are, and I honestly get as much out of it as I give.   

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