Our Children and Families’ Service is exactly that – for families as well as children. It means we’re here for you even if your child doesn’t want any support whatsoever.
Jade’s nine-year-old daughter was diagnosed with biliary atresia as a baby and, when younger, always appeared quite relaxed about her condition.
“We’ve always been honest with her,” says Jade. You don’t really have much option when there are so many medical appointments, and she used to be quite accepting of the situation. Now however, she doesn’t want to talk about it at all and gets upset if I even mention biliary atresia. I’m sure she wouldn’t want to talk to other children with a liver disease. This is very difficult for me because I worry about her, and I feel that talking about it helps.”
Emma* is in a similar situation even though her daughter was diagnosed with autoimmune liver disease in her teens. “My daughter was very brave throughout all her hospital tests and treatments and listens to what the medical professionals say, but other than that, she doesn’t seem to want to acknowledge that she has a liver condition” says Emma. “She’s talking about going to university and going off travelling with her friends as if there were no medical considerations at all. I don’t want to put a dampener on it all – particularly after everything she has been through – but these things just make me worry even more.”
Head of Children and Families’ Service, Michelle Wilkins says that both Jade and Emma’s situations are very typical.
“We’ve seen both of these scenarios many times before and we’re providing support to both mums,” she says. “It is perfectly understandable that a young person may resent their liver condition or simply not want to talk about it. Children and young people generally want to fit in with the crowd and having a rare condition isn’t a great help in that regard.
“What is important though, is that parents realise that we’re here for them irrespective of that. Of course, we have a wonderful young people’s service, and we can help them in many ways. But parental support is not dependant on that. Your child may not be ready to talk or may feel they have sufficient support elsewhere. But if you would like help, be it practical or emotional, then we are here for you and your child does not even have to know that you are in touch.”
Contact our families service at families@childliverdisease.org or contact us here .
*Name has been changed
