For International Batten Disease Awareness Day, Vanessa Anderson, Support Coordinator at Life Without Barriers, shares a very personal story.
Image: Vanessa wears her Order of Australia Medal and stands with her family, smiling at the camera.
Batten Disease Awareness Day is on June 9. To mark the day, Vanessa Anderson, Support Coordinator at Life Without Barriers, shared an insight into her personal life to help raise awareness.
The people and families Vanessa has supported over her 20 years working at Life Without Barriers know her for her dedication and warmth. While some might suspect that her empathy stemmed from a deeper understanding of what they were going through, she had never shared her story with them.
"It's not an area that I've talked about openly with my colleagues, the people I support or their families," said Vanessa.
Jordan was a bubbly, energetic, lovable little guy and at two-and-a-half-years-old was reaching most milestones for his age. But a combination of vision loss, interrupted sleep, clumsiness, absent stares and a major seizure led to his diagnosis with Batten Disease at three-years-old. Horribly, Jordan continued to decline with blindness, uncontrollable seizures, enteral feeding, immobility and then, around the clock care.
"The shock of hearing your doctor say there was no treatment or cure, and that Jordan probably wouldn't make it past six to 12 years," Vanessa said.
"Well, we weren’t going to accept that fate and would search for a cure, meanwhile hoping he might defy odds."
Batten disease, also known as Neuronal Ceroid Lipofuscinosis (NCL), is a group of rare, inherited neurological conditions that primarily affects children. Though children are born seemingly healthy and reach typical developmental milestones in early childhood, the disease causes progressive damage to brain and retinal cells. This leads to; the loss of cognitive and language skills, vision loss, seizures, muscle wasting, and eventually, complete loss of mobility and early death.
Affecting 2 in every 100,000 births, Batten disease is a genetic condition, with 13 known subtypes, all of which are fatal.
For Vanessa and her family, that sad day came in 2002 when Jordan passed at just nine years old.
Image: Close-up of Jordan as a young child, smiling at the camera.
Despite the grim prognosis, there is hope. In recent years, scientists have made major advances in identifying the genes involved, developing genetic tests for diagnosis and carrier detection, and developing life-extending treatments for one form of Batten disease. Developments in gene therapy treatments hold promise for children affected by Batten disease.
Loving and caring for Jordan drove Vanessa to help others.
"Jordan will always be the legacy behind my passion to work with people with disability."
Vanessa became a Disability Support Worker at Life Without Barriers and has held a variety of roles over the years. When the NDIS commenced on the Central Coast, Vanessa felt that her work experience, training, and lived experience as a family member could best be applied to helping families navigate the process of accessing support, and she became a Support Coordinator in 2019.
"My connection with Life Without Barriers originated when they provided respite for my son Jordan," she said.
"When my son received services, it was part of a pilot package offered by the government. So, I can appreciate what it's like to try and access services and the difficulty that comes with it as a parent trying to manoeuvre that," said Vanessa.
"As a Support Coordinator, I can now help others with that burden."
"I’m sympathetic to the daily stresses and needs they may have, able to give compassion and knowledge to help people and their families and assist in meeting those needs through the NDIS."
Vanessa said the Life Without Barriers values are incorporated into her daily work.
"It's always about the person. By helping and understanding them, we apply the values every day."
"Whether it is strengthening relationships and having the courage to be involved in situations that might be difficult. Being responsive to what the participant needs or having to apply imagination and think outside of the box to see what the best options might be. I am always learning, applying what I learn and growing."
In her personal time, Vanessa supports families affected by Batten Disease. She established the Jordan's Batten Disease Research Trust and has held various positions in the Batten Disease Support and Research Association (BDSRA Australia), including as the Manager for 15 years and serving on the board from 2000 to the present. Currently Vanessa is the BDSRA Australia’s Public Officer.
"It’s exciting times and the organisation has grown in capacity and purpose. We recently announced that we have a Patron for the BDSRA and importantly we rely on generous donations from the public to fund our services."
With continued awareness, research, and support, the Batten community moves closer to a future where no child is lost to this cruel condition. Vanessa feels fortunate to work at Life Without Barriers and be involved with the BDSRA and sees synergies between the two.
"The challenges are similar within both organisations, just on a different scale. Both are rewarding and strive for positive change."
In 2023, Vanessa was recognised for her contribution to charitable purposes when she was awarded an Order of Australia Medal.
"When I received a phone call from Government House Canberra saying that I had been nominated, I honestly thought it was a joke," she said.
She later learnt that not only was it real, but that five people had nominated her, and she would formally be presented with such an honour.
"I was just amazed and humbled. It's very special, and I share this with my family who were all on that journey with me."
Image: Vanessa stands at the front of an audience, waiting to cross the stage, at the Order of Australia Medal ceremony in 2023.
Vanessa strongly encourages people to nominate someone they feel should be recognised for their contributions. She believes there are many people within our sector who are worthy of the Order of Australia and should be recognised.
"If you think someone is doing an amazing job in their community, nominate them! In our sector especially, there’ll be someone – it's surprising how much they might be contributing but not realise it’s worthy of a nomination," she advised.
As Batten Disease Awareness Day approaches, she reflects, "Having Jordan was the most wonderful part of my life, and a huge legacy towards the work I do at BDSRA Australia and Life Without Barriers."
