Emma Butterfield
Team Ada London Marathon
Fundraising for Children's Liver Disease Foundation
Story
Myself and my sister in law and Adas Auntie Claire (who has never run before so this is an epic challenge for her) are taking on the London marathon in April 2023 for the amazing children’s liver disease foundation who have supported us since my little girl was diagnosed with chronic liver disease. Please read the story of why CLDF mean so much to us and why we are taking on this challenge for them/
Our beautiful girl Ada (now 7)was diagnosed with Biliary Atresia at just over 4 weeks old, a rare and incurable type of liver disease, this disease effects roughly 50 babies per year in the UK.
Ada was born in March 2015 and all appeared well and we were soon discharged home with our perfect bundle. Ada was still jaundice at 4 weeks but we just thought this was a new baby thing and it would pass, she saw numerous medical professionals in her first 4 weeks from GP's and midwives to health visitors, none of them mentioned her jaundice which backed up my theory.
For some reason around 4 and a half weeks we started to get concerned about her colour. We did what they tell you not to do and consulted Dr Google. After typing in 'prolonged jaundice' the wonderful Childrens liver disease foundation (CLDF) popped up and to my horror revealed in actual fact that baby jaundice was in fact something to worry about at this stage, especially as Ada was showing other signs also, pale stools, dark urine, unsettled again all things we put down to being a newborn. Armed with this information we booked an urgent GP appointment and refused to leave without a referral. That same evening blood tests revealed Ada was in fact very poorly.
What seemed like millions of blood tests and scans later we were given the dreaded diagnosis and told Ada needed emergency and life saving surgery to try and restore bile flow and save her liver, we were told this operation only had a 60% success rate but the odds were good for Ada as her diagnosis was early and the success rate often depended on the age of surgery. After 12 weeks the liver is so damaged the only hope of survival is a transplant.
On the 7th May 2015 we handed our perfect girl over to her amazing surgeon (our hero) and all we could do was wait and hope and pray. Her time in theatre was the longest and darkest 7 hours of my life and the pain I was in emotionally was immeasurable, the only source of hope was the CLDF representative that took time out to come and sit with us and offer us stories of hope, telling us about children living life to the full with the same condition as Ada, I cannot begin to explain just how much this helped us as a family in what really was our darkest hours.
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 other end of the phone to offer us support, and continue to be invaluable for us.
There are over 100 types of liver disease that effect children and 2 children a day are diagnosed, yet CLDF are the only charity in the UK to support families like ours, they are a tiny charity and rely heavily on fundraising and donations.
Although Adas op 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.
Like lots of charities CLDF have suffered a huge loss during the 2020 pandemic with so many of their fundraising events being cancelled.
Please help us by giving whatever you can and help CLDF continue with the amazing work they do, and you never know your donation may just help find a cure for our beautiful brave girl and children like her.
Thank you for taking the time to read this
Much love
Ada’s daddy Michael & Auntie Claire
Our beautiful girl Ada (now 7)was diagnosed with Biliary Atresia at just over 4 weeks old, a rare and incurable type of liver disease, this disease effects roughly 50 babies per year in the UK.
Ada was born in March 2015 and all appeared well and we were soon discharged home with our perfect bundle. Ada was still jaundice at 4 weeks but we just thought this was a new baby thing and it would pass, she saw numerous medical professionals in her first 4 weeks from GP's and midwives to health visitors, none of them mentioned her jaundice which backed up my theory.
For some reason around 4 and a half weeks we started to get concerned about her colour. We did what they tell you not to do and consulted Dr Google. After typing in 'prolonged jaundice' the wonderful Childrens liver disease foundation (CLDF) popped up and to my horror revealed in actual fact that baby jaundice was in fact something to worry about at this stage, especially as Ada was showing other signs also, pale stools, dark urine, unsettled again all things we put down to being a newborn. Armed with this information we booked an urgent GP appointment and refused to leave without a referral. That same evening blood tests revealed Ada was in fact very poorly.
What seemed like millions of blood tests and scans later we were given the dreaded diagnosis and told Ada needed emergency and life saving surgery to try and restore bile flow and save her liver, we were told this operation only had a 60% success rate but the odds were good for Ada as her diagnosis was early and the success rate often depended on the age of surgery. After 12 weeks the liver is so damaged the only hope of survival is a transplant.
On the 7th May 2015 we handed our perfect girl over to her amazing surgeon (our hero) and all we could do was wait and hope and pray. Her time in theatre was the longest and darkest 7 hours of my life and the pain I was in emotionally was immeasurable, the only source of hope was the CLDF representative that took time out to come and sit with us and offer us stories of hope, telling us about children living life to the full with the same condition as Ada, I cannot begin to explain just how much this helped us as a family in what really was our darkest hours.
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 other end of the phone to offer us support, and continue to be invaluable for us.
There are over 100 types of liver disease that effect children and 2 children a day are diagnosed, yet CLDF are the only charity in the UK to support families like ours, they are a tiny charity and rely heavily on fundraising and donations.
Although Adas op 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.
Like lots of charities CLDF have suffered a huge loss during the 2020 pandemic with so many of their fundraising events being cancelled.
Please help us by giving whatever you can and help CLDF continue with the amazing work they do, and you never know your donation may just help find a cure for our beautiful brave girl and children like her.
Thank you for taking the time to read this
Much love
Ada’s daddy Michael & Auntie Claire