There is a distinct lack of support resources for children and young people who are impacted by leukodystrophy, either being affected themselves or with an affected family member. The support available is often focused on parents and carers, which is why we are developing support resources for children and young people.
Our Children’s book for ALD (Adrenoleukodystrophy) is the first in a series of books we will be producing. We will continue to update this page as further resources and books are developed.
Children’s book for ALD (Adrenoleukodystrophy)
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 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.
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: ALD book
To order yourself a hard copy please contact info@alextlc.org
Spanish and German translated versions
We have produced translated electronic versions of the book in Spanish and German.
We would like to thank Jean F Cappello for translating the book into Spanish.
Nos gustaría agradecer a Jean F Cappello por traducir el libro al español.
We would like to thank the European Reference Network for Rare Neurological Diseases (www.ern-rnd.eu) for translating the book into German.
Wir danken dem Europäischen Referenznetzwerk für Seltene Neurologische Erkrankungen (www.ern-rnd.eu) für die Übersetzung des Buchs ins Deutsche.
To access the Spanish version: ALD book – Spanish
To access the German version: ALD book – German
Why we created the book
“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.”
How the book has helped families
“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.”
Acknowledgement to our funder
This project would not have been possible without the funding provided by bluebird bio.
