Approaching the end of life

Facing the death of a loved one is always extremely difficult - even more so when it’s a child or young person.

Not only is this an extremely emotional time, but you may find that the symptoms your child is experiencing change and may become harder to cope with. (You can read more about symptoms in Later stages of Juvenile Huntington’s: what to expect).

Getting support

  • Children’s hospices and pediatric palliative care services can provide essential care for your child that can greatly improve their quality of life - and this can start quite early on in the progress of the disease. Hospices and palliative care services can also help you and your whole family as the end of life approaches, and afterwards, through your bereavement. Care is not just medical but also aims to support emotional needs, including spiritual care for for people of all faiths and none.
  • While these services can be excellent at caring for children with extremely complex and life-limiting conditions and their families, they may not have specific experience of Juvenile Huntington’s, because it’s such a rare condition. Our Special Adviser on JHD can work with help to help them to understand the disease and your child’s specific care needs.
  • Our JHD Special Adviser and your local Specialist Huntington’s Disease Adviser (SHDA) can also provide direct support to your child and your family, as well as connecting you with other support services in your area.
  • If your child is experiencing seizures, it’s important to involve an epilepsy specialist. Our JHD Special Adviser or your local SHDA can help organise this.
  • Our specialist youth worker can help support siblings of children with Juvenile Huntington’s, who may be experiencing feelings such as grief, guilt and fear as they face losing their brother or sister.
  • Also take a look at our section on Carers - approaching the end of life for more information about how to get the help and support you may need yourself to get you through a very difficult and sad time.

If you can’t find the information or help you need, please contact us. We’re here to help.