Ollie was just a couple of days old when doctors at hospital in Belfast told his parents that they thought he might have Alagille syndrome, a rare genetic condition which can also affect the heart, kidneys, eyes and bones as well as the liver
Months of tests and hospital stays followed until Ollie’s diagnosis was confirmed when he was four months old. It was during a visit to the specialist liver unit at Birmingham Children’s Hospital when his parents, Tammy and Mark, first heard about Children’s Liver Disease Foundation (CLDF).
“It was a really tough time for us,” says Tammy. “We knew nothing about Ollie’s condition and were so worried when we looked into the future about how it might affect him. But we noticed that all the information we were given about liver disease and Alagilles came from Children’s Liver Diseaes Foundation and we found this really helpful.
“When we attended the liver clinic back at the Royal Children’s Hospital, CLDF’s families officer would be there to chat to us. It was great to see a friendly face each time and she would always be happy to answer our questions.
“When we heard that CLDF were coming over to Northern Ireland for a family weekend we weren’t too sure about it as Ollie was only a year old at the time and we thought he was too young to get involved with anything. However we decided to go along to the event, which was at local attraction, Todd’s Leap, and we are so glad we did.
It was great, not only to meet more of the CLDF team but also to meet other families whose children have liver disease. I even met a young lady called Katie who has the same condition as Ollie. She was amazing at answering any question I had on my mind. This meant a lot to me as Alagilles is such a rare condition.
“Ollie is doing pretty well at the moment although the itching (one of the symptoms of his condition) can really upset him. It’s one of the reasons I am so pleased to speak to people who understand what this is like. I have kept in touch with Katie since the weekend and I also swapped numbers with some of the other mums. It is so helpful for me just to speak about what we’re going through with people who are expericing a similar situation. I wouldn’t be able to do this if we hadn’t gone to the family weekend and now I have a little support network.”
