From midday on 30th November until midday on 7th December, we are hoping to raise £4000 which will be DOUBLED to £8000.
These funds will be used to write and illustrate a book designed to support children affected by adrenoleukodystrophy (ALD) and their siblings. Our primary goal is to support children, build emotional resilience and encourage openness to talk and ask questions following the diagnosis of this rare condition.
Our research shows how both an affected child and their sibling’s life can change following diagnosis. For the sibling they can easily become a ‘shadow’ or have their needs met after the siblings who will have multiple hospital appointment. Family dynamics will change, children will see upset parents, they will hear a lot of confusing words they do not understand. There are no child focused resources that explain to siblings the effects ALD will have on the family unit; we want to change that.
Our book will be a resource that can be utilised by families following a diagnosis of ALD for one of their children. The book will be from the perspective of a sibling diagnosed with ALD. It will show the experience of the situation, one that is relatable and understandable for children.
Alongside practical information, we are to include the emotional side with key messaging being of hope, playfulness, joy and how a sibling’s relationship can play a supportive role.
We will update this page when our campaign goes live.