Our children’s book “A present for my sister” was presented to our community and supporters as a key support tool for families. Written by Rosalind Stopps and illustrated by Jessica Fitz-Howard, this beautiful book is a great tool for families to explain Tay-Sachs and Sandhoff to siblings and young relatives of patients impacted by these disease. It can also be used as a book to help with the grief associated with the diseases’ progression and inevitable fatality in the most severe forms. Copies of the books are free for families affected by Tay-Sachs and Sandhoff and our families are encouraged to contact us to arrange a copy being sent. A digital version is also available on the website which can be accessed via the link above.
The book
The campaign was launched in November 2022 with the aim to support families as they navigate the challenges of explaining Tay-Sachs and Sandhoff disease to siblings and family members. The book tells the story of a young girl who embarks on a journey to find the perfect present to play with her sister.
The children's book will ensure that families have the tools they need to explain Tay-Sachs and Sandhoff to siblings.
Rationale
We know that a simple to read resource is needed to support siblings.
Goals
We want siblings to understand the diseases so they feel empowered.
Next steps
We aim to translate the book into new languages if requested by families.
