Story
Thanks for taking the time to visit my JustGiving page.
Many of you know that Enola was born with an incredibly rare condition known as Biliary Atresia. This condition only affects around 45 children born in the UK every year.
Her condition causes the bile duct system either to be missing or not to function properly. The cause is unknown but something that develops during pregnancy and is only detectable post birth.
Without surgery (Kasi procedure) or a liver transplant this condition is fatal. 10% of children with this condition do not make it to the age of 2. A third require a transplant before the age of 2, a further 3rd later in life and only a third retain their native livers.
Enola was diagnosed incredibly early in life, at just 12 days old. Most children are 6 weeks old or older at which point their only option is a transplant. She had 9 hours gruelling surgery at 17 days old to create a new bile duct system using a large piece of her intestine.
Whilst the surgery went very well, she has developed a secondary condition known as Portal Hypertension which affects her spleen. She has lost the right lobe of her liver and this is irreversible no longer functional. Her left lobe has significant cirrhosis and fibrosis. She will in time be one of those who need a transplant although when is not known.
Would you know from looking at her she lives with chronic liver disease (that will never go away)? Well no. In the most part she is thriving.
The pandemic hit us all hard and our only source of support was CLDF. They kept us up to date with recommendations and help us navigate all the advice and guidance. It was a nightmare trying to filter through it all.
Please help Mick and I be part of keeping CLDF going. They desperately need your assistance and funding.
They are the ONLY charity supporting children and their families with liver disease in the UK. they are our lifeline ❤️ And the lifeline to so many other people ❤️.
On the 12th September Mick and I are completing the Great North Run together and hope to raise some much needed funds for this charity which solely relays upon donations.
Thank you for reading our story and helping us in anyway you can.
Much love,
Charlotte, Mick and of course Enola.