1800 244 735

Helpline (02) 9874 9777

HD Spotlight on Jaime Bodiam

The HD Spotlight on Jaime Bodiam – community member and Juvenile HD mum

Q. Tell us about your HD Journey? 

A. My daughter Lily was just 10 years old when diagnosed with Juvenile Huntington’s disease (JHD). We had spent the previous 6 years investigating what was happening to her. Lily went through multiple diagnoses including speech delay, sensory processing disorder, Asperger’s, autism, and mitochondrial disease. In doing so, Lily went through a multitude of unnecessary procedures including liver biopsies, muscle biopsies and multiple MRIs under general anaesthetic. A simple blood test was all it took in the end for an automatic diagnosis of HD for Lily and her Dad.

By this stage Lily was already in a wheelchair, had a feeding tube and a full-time carer at her school. Fortunately, I was able to care for Lily right until the very end at home with the help of her Palliative Care Team. This was important for us, seeing as Lily was only 16 and didn’t want to be in hospital away from her siblings and her puppies.

During the last 12 months we received the devastating news that my two sons aged 15 & 18 also had the positive gene for HD. My 12-year-old daughter hasn’t been tested.

 

Q. What unique barriers do you think JHD families face?

A. JHD is extremely rare and it was not only my first experience with JHD but the first time almost everyone in our lives had even heard of HD. I felt very alone as I was navigating the changes and trying to work out what the future would be for Lily.

After Lily’s diagnosis of JHD, I had to navigate my way through supporting Lily, facing the way the disease progressed, modifying our house to accommodate the required equipment, building and coordinating an amazing team around me to help to support Lily and basically learning how to become a nurse.

 

Q. If you had time with the Prime Minister what would you like him to change to improve the lives of HD families?

A. There are a number of things the PM has the power to do in order to improve the lives of HD families:

  • Ensuring NDIS funding is sufficient for the needs of those with HD and ensuring it is scalable as the disease progresses. For us, the NDIS was an absolute nightmare to begin with. It was time consuming with so many barriers just to get the equipment that every person with HD should be provided.
  • Increase education and awareness of HD.  Because of the degeneration of the brain, many people with HD end up making bad decisions or becoming increasingly frustrated when attempting to communicate and end up in situations that can be avoided with better awareness of HD and its symptoms.
  • Significant money needs to be invested into research and trials for HD so that treatments can be developed to arrest the progression of HD.

 

Q. Why do you think it is important for HD families to share their HD story and fundraise?

A. Although we live in a beautiful caring and tight knit community, many of the people who took part in the fundraiser, many who have known my family almost our entire lives, just didn’t know the full extent of what happened to Lily and the devastation the disease causes. Fundraising not only secures much needed funds for research and support but ensures a greater understanding of not only HD but other rare diseases and the people who have them.

 

Q. What is your ideal Sunday?

A. A sleep in, a coffee then either a day at the beach with the kids or working in my garden.

Latest News and Stories

CEO announcement for Huntington’s Australia

Published date: 16 January, 2023

Following the recent announcement about State Association memberships agreeing to proceed with a national merger, Huntington’s Australia (HA) has appointed a new CEO to lead the new association. Lenni Duffield, from Huntington’s WA, has been unanimously endorsed by the HA Board as the inaugural CEO of Huntington’s Australia. Lenni has held senior roles and provided ... Read more

Members have agreed to merge into a new, single entity, Huntington’s Australia

Published date: 6 December, 2022

We’ve got some great news to share! Members of five State and Territory organisations (Queensland, NSW ACT, Tasmania, SA&NT and WA) have agreed to merge into a new, single entity, Huntington’s Australia (HA). We are all very excited about the opportunities this will provide to the Huntington’s community. The merger will bring together five associations ... Read more
HD news image

HD News Spring 2022

Published date: 22 November, 2022

Download your copy of HD News Spring edition by clicking on the link. Some of the highlights in this edition are: Information on the proposed merger Growth of our NDIS team Walk 4 Hope wrap up Youth Connection program update and some exciting news We hope that you enjoy this edition of HD News. If you ... Read more

Awarded for the Association Turnaround of the Year

Published date: 10 November, 2022

The Association Awardsᵀᴹ recognise excellence and accomplishment by associations and outstanding individuals. In addition to recognition, the process of nominating for an Award will be a worthwhile experience as it will encourage associations to consider the factors that make a successful association, turnaround or campaign.
APDA logo

APDA – The Good, The Bad & The Hack

Published date: 10 October, 2022

Huntington's NSW ACT is a member of The Accessible Product Design Alliance (APDA), which is a group of not-for-profit consumer health organisations working together to represent people with chronic conditions who are significantly impacted by inaccessible products and packaging. This campaign aims for those living with a disability to share their experience of different products to raise awareness of accessible and inaccessible experiences, support others to make their lives easier and help us educate product and packaging manufactures about what they need to improve.

Proposed Huntington’s State Associations’ merger going to a membership vote

Published date: 30 September, 2022

On behalf of the Consortium of Australian Huntington’s Associations (CAHA) we are updating you on the proposed merger of the five State and Territory Associations into one new national body. Each State Board has determined that the merger is the best path forward for enhanced and sustainable supports and services to be provided for people affected by Huntington’s disease.