"Ask as many questions as you need to professionals and just remember there is a whole community of parents going through the same thing so reach out! "

Sophie and her partner Jordan have shared their experience with their daughter, Luna, who has just started school.

We first became aware that something was wrong when Luna was two weeks old. Our midwife was concerned about her jaundice and referred her to the prolonged jaundice clinic where she had bloods taken. Just a few hours later I had a phone call to say that something was wrong with her liver.

We were then in and out of the Princess Royal Hospital in Telford for a few days for tests and that’s when we first heard the term biliary atresia. It was not a condition we had ever heard of and at that point we didn’t even know that this meant our daughter had a liver disease. When it was confirmed, Luna had her Kasai operation and that’s when we first heard about Children’s Liver Disease Foundation, now Liver UK.

The main benefit to us of CLDF was being able to access information about Luna’s condition and its implications, not just for ourselves, but for family members who wanted to understand what is wrong with Luna.

Since her Kasai, Luna has been constantly in and out of hospital including three months in Birmingham Children’s Hospital where she was listed for transplant. However after a lot of intervention, transfusions and NG feeding, she stabilized and has been taken off the list at least for now.

Now she’s four years old, she’s much more aware of what’s going on so certain things like blood tests are becoming quite challenging. On the plus side she has settled into school really well, I was quite worried about her doing full days and going into a new setting with new staff but so far so good.

Luna’s condition has certainly been tough on her siblings, especially when Luna gets admitted into hospital for 10 days (which happens quite a lot) but we know it’s what Luna needs.

Big Yellow Friday is an important day for the whole family. For me, it’s not only about raising much-needed funds but also awareness of her  condition. It’s an opportunity to get the whole community involved and we also see it as a little celebration of how far Luna has come.

I speak with quite a few different families who are affected by childhood liver disease. It’s quite comforting knowing there are other parents to talk to who are going through the same or similar to us.

My advice to other parents would be don’t lose hope! There will be good days and there will be bad days but try not to focus too much on the bad days. Ask as many questions as you need to professionals and just remember there is a whole community of parents going through the same thing so reach out!

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