We have created a Children’s Book to support the siblings of children diagnosed with childhood cerebral adrenoleukodystrophy (CCALD). The primary goal is to support children and their families to build emotional resilience, and openness to talk and ask questions about a diagnosis of CCALD.
The book is free to access and is available both electronically and as a hard copy.
To access the electronic copy, please click on the link: Children’s Book
To order yourself a hard copy please contact firstname.lastname@example.org
The diagnosis of a rare condition can be a scary experience, especially a diagnosis such as CCALD. We hope our book will help make a CCALD diagnosis more relatable for children, providing child friendly advice and coping mechanisms. The book is a supportive tool for affected children, siblings, and their families. It will be a tool parents can utilise in family discussions, a story they can explore and discuss together. It will also act as a resource that both Alex TLC and other medical professionals can recommend to families to utilise.
“I think the support is already there for the person with ALD, but not the siblings.”
“You’ve got the nurses and the play specialists and everyone’s very focused on the child with ALD, making sure they are alright. The siblings can get forgotten about.”
“Siblings are living with the reality; overhearing conversations and see what’s going on. Whereas sometimes, as the child with ALD deteriorates, they are less aware of what’s happening. A book would be better to be targeted at to try and explain it to the sibling.”
“It puts a lot of pressure on the parents as they then have to explain to the children the things, and as they are their children they want to protect them and change the wording.”
“I think the most useful part was the different feelings expressed by the sibling in the story.”
“Reading about how the whole family has been affected, this is very relatable to our family.”
“It was so good to have it explained in a format which was more accessible to younger children.”
“It showed them it was ok to feel how they were feeling about the situation, make it feel like is was normal”
“Informative, easy to understand the challenges of the individual and his family.”
This project would not have been possible without the funding provided by bluebird bio.