As we reported last week, CLDF is supporting NHSBT’s Waiting to Live campaign which uses some beautiful hand- made dolls to represent just some of the children who are waiting for an organ transplant New campaign highlights need for child organ donation – Childrens Liver Disease Foundation (childliverdisease.org) We are the proud guardians of the Ralf doll and Daisy, mum to real life Ralf, explains why she became involved in the campaign.
“Ralf is now two and a half and he has been waiting for a liver transplant for about a year. He has PFIC 2 and one of the major symptoms is chronic itching, making him really uncomfortable both day and night, affecting things like Ralf’s mood, appetite, playing and sleep.
“He was healthy for the first six months then symptoms of his condition started, he was suddenly jaundiced. It took a while to get him diagnosed and we were part of the trial for Maralixibat which I know has been very successful but sadly it didn’t work for Ralf so he had to be listed for a transplant.
“His condition is up and down, on a bad day he’ll have no appetite, be irritable and tired, he won’t play and wants to chill. He just wants to itch and cries because he’s scratching and it hurts. He’ll wake up every couple of hours in the night and it gets very tough.
“Waiting is very difficult to be honest, lots of ups and downs. You try to forget about it and get on with your life but it is always there and impacts everything, we can’t make plans, we have to try and keep Ralf well. You try not to get your hopes up that a transplant is coming but you do, it never goes away.
“You don’t think about organ donation unless something happens to you or someone close to you but this is why we wanted to be a part of this campaign. Even if people can have a quick chat about it, what you’d do if something happened where your child was in a position to donate their organs, then it’s worthwhile.”
Thank you for being a part of the campaign Daisy. Many of our families know exactly what you are going through and will be wishing you and Ralf all the very best.
