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Talking to your children about Huntington's

Talking to kids about HD can difficult. The idea of upsetting children often stops parents talking about the disease at all. However, research tells us this is not helpful.

By not talking about HD, it means keeping secrets. And keeping secrets in a family can lead to the children losing trust and feeling powerless. Even worse, if we cover things up children can create their own explanations for “the family secret”. These imagined versions are often much more scary and upsetting than the reality.

A Guide for Parents, Carers and other Important People

We appreciate every family is different- and every child too. The information in this resource pack is not a set of instructions, it is a general guide to be used as and when you need.

We know talking about Huntington's Disease is really difficult. Due to the fact that it's 'passed down' in families - and affects our loved ones - It's easy to understand why talking about HD can be very stressful and painful. These emotions can overwhelm families and stop people from talking.

We know this because parents and carers in our community tell us what happens. It's why the younger ones don't get a chance to learn about the disease.

Huntington’s WA has put together a resource pack to help parents talk to their children about HD. Follow the links below to the appropriate age group for advice on how and what to discuss with your children.

Why it's better to talk sooner, rather than later.

We now know that an inherited disease is nobody's fault. Yet, for many people with a genetic illness, they can still feel shame and the perceptions of stigma persist.

There's ways to reduce and keep these emotions in check. Talking about Huntington's with others can help us 'process' the emotions and reactions with experience. By learning and understanding that others have similar thoughts and feelings, we gain a sense that we're not so 'different' and find it easier to accept our feelings and the best ways to work through them.


Available as a Resource Pack

Make learning about Huntington’s more enjoyable for your child with our Family Resource Pack



Growth wall chart

As Children grow so does knowledge. Grow and learn with the Huntington's WA resource pack.

To measure your children as they grow, the growth chart is also a reminder to use our resource pack. Remember, as they grow their HD knowledge will be growing too!


Resiliency Stickers

There's much we can do to help our young ones build resiliency. We can set them up to be stronger so that news about Huntington's doesn't blow them sideways. This includes giving them the tools that can help work through any difficulties ahead.

In other words, we can build their 'Resiliency'.

We've broken the term "Resiliency" down to six key qualities. And to make it more fun for kids, we've matched those six qualities into characteristics represented by these Australian animals:

  • Great Crested Cockatoo - These beautiful, noisy birds are always telling their story. Knowing who you are gives you a strong sense of identity.
  • Magpie - Just like these sassy birds, we gather lots of things from outside our immediate family. By picking up knowledge from others and learning from school we gain strength to soar!
  • Dingo - When it comes to reading their pack, Dingo's are so savvy. Being self-aware and knowing how to manage our feelings helps us get along with others. 
  • Kangaroo - Talk about bounce-back-ability! They're always having fun as a mob. It's crucial to enjoy 'family time'. It helps the little ones to bond and for teenagers to 'off load' if they need to.
  • Numbat - These clever little critters develop support networks outside their immediate family. By connecting to our friends and peers, we can lean on good people if things get tough at home.
  • Echidna - Ever seen an Echidna eat? Google it: It's an amazing and unique skill. We all have a talent or skill that makes us, well - us! Developing your special skill is great for self- esteem and fun on a rainy day!



Activity Cards

Ten fun-filled activities for you to enjoy with your children and family, and to grow your Huntington Disease knowledge. They are carefully designed to trigger questions and conversations about Huntington's Disease. Each activity reflects inspiring personality characteristics as displayed by the animal stickers.




Our storybook about Ned and Norma Gnome is a fantastic resource to share quality time with your children, have some fun and start a conversation at the same time.

You can download the storybook with the following links Download as .pdf or Download as .epub



 Purchase your Family Resource Pack

About the Art and the Artist

Rory Charles

  • DOB - 1/3/04
  • Age - 14 years
  • Cultural Group - Wunambal Gaambera, Nyikina, Balangarra
  • Title - Four Seasons My Country
  • Date - 2018
  • Medium - Gel pen on paper

Growth Chart Story

My picture incorporates some of the plants, animals, and activities that occur around the four seasons in my Wanambal Gaambera peoples country near Kalumburu in the far north of Western Australia. I did this because I believe that our children understand the concept of growth and change best through their experiences of the seasons. I then chose animals that are found in WA with strong personal characteristics that children who are impacted by Huntington's disease in their family might be able to identify with. I researched and asked family and community members for stories that might help explain these characteristics a bit better. These stories include:

  • Balngerr the Sulpher Crested Cockatoo
  • Coolbardi the Magpie
  • Orrolu the Dingo
  • Aamba the Kangaroo
  • Noombat the Numbat
  • Gunanji the Echidna

I placed some of these special animals (with others) in the artwork so that the children could see what the landscape looks like in different seasons, the boab trees, theanthills, the open savannah country, the rivers teaming with wildlife and cultural aspects of life with the people dancing.