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.