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

Wave Life Sciences Announces Positive Update from Phase 1b/2a SELECT-HD Trial

Published date: 29 September, 2022

SELECT-HD (NCT05032196) is an adaptive trial designed to rapidly optimize dose level and frequency based on early indicators of target engagement. The trial update announced today is being driven by the observation of reductions of mutant huntingtin (mHTT) protein in cerebrospinal fluid (CSF) after study participants received either a single 30 or 60 mg dose ... Read more
HD news image

HD News Winter 2022

Published date: 1 August, 2022

This is your downloadable copy of the HD News Winter 2022 edition. In this edition you'll be able to read up on the Walk 4 Hope and how to register, HDNA and the map-HD registry and more.
Summer Foundation logo

Summer Foundation report on effective housing and support models

Published date: 19 July, 2022

People with Huntington’s disease require high levels of specialised care in order for them to manage daily living tasks. Specialised housing for people with Huntington’s disease in Australia is limited. This is in part due to a lack of funding and in part due to a lack of appropriate facilities. For many people, this means that their only option is to live in residential aged care (RAC). Living in RAC is generally not appropriate given that the environment often has a lack of age-appropriate activities, and social interaction.
Tax Appeal 2022

Tax Appeal – help Brendan get specialist support

Published date: 14 June, 2022

The end of the financial year is just around the corner, and we need your help. You can support the valuable work of Huntington’s NSW ACT by kindly making a tax-deductible donation before June 30. Your donations will help our team connect and care for individuals and families affected by Huntington’s Disease across NSW and the ACT.
Huntington's Disease Network of Australia logo

Join the Map-HD Registry today

Published date: 30 May, 2022

Please join with the HDNA as we work toward facilitating the best quality of life for every Australian affected by Huntington’s Disease (HD). Now more than ever, research teams and companies across the globe are testing possible treatments for Huntington’s Disease.
lady doing an announcement

NAA seeks commitments for the 2022 Federal Election

Published date: 10 May, 2022

The Neurological Alliance Australia (NAA) seeks commitments from parties and candidates for the upcoming Federal Election to address the urgent needs of adults and children living with neurological diseases in Australia.