Huntington's Disease Association

How we can help you talk with and support your child.

Telling your child about Huntington's disease is a challenging time and subject but we want to help make this easier for you.

There is no rule about how or when to deliver information about Huntington’s but we do recommend that you are sensitive to the child’s age and level of understanding or maturity.

Below are some resources to help you and your child.

Understanding what Huntington's is and changes they might see

Helping to answer questions they have openly and honestly

How we can support them together using the workbook and HDYES

Children's workbook

We have created a workbook to help inform children about Huntington’s disease and to help them explore their feelings and ask questions. Our intention is for the workbook to be used by an adult to introduce the topic of Huntington’s disease to a child when they feel they need to understand more about it.

The workbook is not intended to be handed to a child as an information booklet or something they complete by themselves.

If you wish to order a copy, please call 0151 331 5444 or email info@hda.org.uk

How to use the workbook guide

Your children's workbook pack

Workbook sheets to introduce to your child at their own pace

Other children's books

There are some children's books that we feel will help smaller children understand the changes they might start to see in a relative that has Huntington's. Both books are written by people who have a connection to the Huntington's community. Finding Nana's Smile is written by Jimmy Pollard, author, speaker and Huntington's advocate. Harry Needs a Hug is written by Emma Terranova who is a Huntington's disease family member and runs Campaign For My Brain.

Finding Nana's Smile

Without a welcoming smile and a big hug, Keira suspects that Nana doesn’t love her. But she and her cousins discover that Nana enjoys playing with them. She does love them! She just shows it differently now.

Order here

Finding nana's smile

Harry Needs a Hug

Harry is a little boy, who has a best friend called Betty. One day, the doctors tell his daddy that he has something called ‘Huntington’s disease’ (HD). Harry talks to his best friend Betty, who helps him to understand Huntington's and supports him through his worries.

Order here

Harry needs a hug

Ways we can support your child

Huntington's Disease Youth Engagement Service

I can hand-on-heart assure you that getting the youth engagement team involved will help relieve any of your worries about approaching children about Huntington's. The help they provide is just astounding. I don’t believe I or the children would cope without their time and effort. They go above and beyond to fully support my children and create a fun, safe place to talk.