As all of our families know all too well, childhood liver disease affects the whole family, not just the child with the condition. So we were very pleased to be able to launch our dedicated siblings pack at the end of 2018.
“It’s only natural that when one child in a family has a serious lifelong condition, there is going to be an impact on other children and this can show itself in different ways,” says CLDF’s Head of Support, Michelle Wilkins. “It’s an issue which crops up frequently when we are talking to families so we have made great use of the siblings pack over the past year and we have been delighted that so many families have found it so valuable.”
Here’s what some of our parents have had to say about it:
“When [my son] read it for the first time, it opened up channels of communication and enabled him to describe how difficult some aspects of his sister’s condition had been for him. It helped him understand things from other perspectives and it validated his own.” – Claire
“The CLDF pack has been an invaluable resource to our two boys. They have support in the written word alongside the support we offer them. They can digest the content and understand the context. They have battled on alongside the peaks and troughs since transplant and with the focus nearly always on the sick child, an acknowledgement and shift of focus on the siblings is a godsend.” – Maeve
“Going through this pack highlighted some gaps in [our son’s} knowledge that we were quickly able to offer advice on before he had begun to worry. The advice to spend time on his own with one of us was really good as it gives opportunity for him to bring anything up he doesn’t understand but doesn’t want to ask in front of his sister. As ever having a sibling with liver disease is a journey and so it is so great to have the support from CLDF along the way as the path is not always smooth.” – Kirstin
“The pack had been of great use and a fabulous piece of support and education for siblings. It has allowed [our daughter] to feel more confident and able to understand and know she is not alone with plenty support available too.” – Elaine
If you think a siblings pack would benefit your family or would like to discuss a concern you have regarding siblings please contact us at families@childliverdisease.org.