Comments on: Here I am still

By: Clair

Clair — Mon, 27 Oct 2025 05:54:16 +0000

The medicine list! I remember having colour coded syringes filled in the morning and having something to do every two hours. My daughter did so well with a routine. Thank you for giving us all hope.

By: Joanne Owens

Joanne Owens — Sun, 26 Oct 2025 14:08:26 +0000

In reply to Clare Wesley. Lovely Clare my son also BA had a transplant 7yrs old and turning 11 x

By: Karen east

Karen east — Sun, 14 Jan 2024 10:20:22 +0000

Thank you for sharing. My son with Biliary Atresia is now 18 (native liver) and this takes me right back to when he was born. Extremely scary time at diagnosis (emotional, new baby, away from home). Forever grateful for all the research, cldf and the amazing medical team. We were at Birmingham Children’s hospital.
One thing for sure, you never stop looking for signs as a mum of someone with a liver condition – always check health, always look for signs of jaundice, always worry a little.
But I feel fortunate that we have so much research happening and that more is being understood. Sending love and strength to anyone on this same journey especially if you have just had a diagnosis with your new baby.

By: Katie

Katie — Sun, 14 Jan 2024 10:02:45 +0000

Thank you for sharing your story. It’s moving to hear about your life and how you and your family have coped. One of my twin daughters has biliary atresia and had her Kasai almost 3 years ago. She’s a very head strong 3 year old with a lot of determination. Katie.

By: David

David — Sun, 21 May 2023 10:59:08 +0000

As a Father of a beautiful 4 year old boy with Biliary Atresis, this is lovely to read. Thanks for sharing.

By: Linda

Linda — Thu, 07 Jul 2022 20:54:24 +0000

Hello Lesley and Lajlah,

I was so moved by your story and felt I needed to write to.

I am so amazed that you have battled through this condition and now 47,
I hadn’t known of anyone , I so relate to everything you describe, my daughter Natalie born October 1973, a beautiful baby with big blue eyes, no one picked up she was ill, pale stools and dark urine I mentioned to health visitor but told all ok. Natalie went into hospital at 10 weeks old with chest infection. Within days our lives were turned upside down, she was moved to Queen Elizabeth childrens hospital Hackney. It was first thought she had hepatitis, Natalie underwent 2 operations, then were told it was Biliary Atresia eventually it was decided to do the Kasia, she was 8 months by now, after 4 hours we were told her liver was too damaged to do it. Natalie died 2 months later, I was contacted by Mr.Alex Mowat from Kings who asked could he have her liver in order to help him save lives of other babies born with Biliary Atresia, he was so grateful as it’s very rare.

I would like to think this helped others including you .

As you say no CLDF , I have over the past few years raised money on BGY, feel it’s good to do something in her memory. I have 3 other grown up children and 3 grandchildren, but still remember her like it was yesterday.

Am so happy you made it.

Kind Regards
Linda Rodriguez

By: Clare Wesley

Clare Wesley — Thu, 07 Jul 2022 20:11:19 +0000

Your story has made me cry, so amazing to hear of one of the first Kassi’s in the Uk and that you have not need to be transplanted.It was the milk/medicine list that did it, brought back memories of coming home with my daughter after her Kassi which she had 32 years ago this week, performed by Mr Howard with professor Mowart and Georgina Vergani leading the team that looked after her. She was not as lucky as you and needed a transplant at 13, she has had had ups and downs but mostly she has been well. I will always be so grateful to the amazing team at kings. My daughter is now a paediatric nurse and has looked after a handful of children with Billary Atresia. I was part of an the West Sussex branch of CLDF who raised a good sum of money for the charity, the biggest drive to raise the money was the hope that a cure would be found for this disease or at least make sure babies are picked up early so the have a good prognosis. If your baby is jaundice after 2 weeks get them checked out. Thanks for sharing your amazing story.