A new approach at Northern Beaches Hospital is helping two-year-old Charlotte receive essential treatment closer to home – while reducing disruption and creating more time for the people and moments that matter most.
Two-year-old Northern Beaches resident Charlotte lives with Mitochondrial DNA Depletion Syndrome 4A, also known as Alpers syndrome – a rare genetic condition that affects the mitochondria, the parts of our cells that produce energy. It is caused by changes in the POLG (polymerase gamma) gene, which helps copy and maintain mitochondrial DNA. When this gene does not work as it should, it can affect organs that need large amounts of energy, particularly the brain and liver. For Charlotte, this includes seizures that require continuous medication to manage.
After being discharged from the Sydney Children’s Hospital intensive care unit in July 2025, Charlotte returned home with support from the Sydney Children’s Hospital Network palliative care team, working alongside the Northern Beaches adult palliative care team.
At first, Charlotte’s midazolam infusion needed to be changed every day. Her parents had to be home at 11am for a clinician visit, and the timing could interrupt Charlotte’s care, activities and time together when she was awake. Any delay also carried the risk of the infusion running out and seizures breaking through.
A new approach to care closer to home
In May 2026, a collaboration between Sydney Children’s Hospital Network, Bear Cottage and Northern Beaches Hospital introduced a different way of managing Charlotte’s medication.
Charlotte is now supported with a continuous ambulatory delivery device, or CADD, in an approach Northern Sydney Local Health District describes as a first of its kind in New South Wales for this type of treatment.
Charlotte and her family now attend the Northern Beaches Hospital Paediatric Ambulatory Care Service twice a week for infusion changes and ongoing clinical support.
“It means we can spend more time as a family with Charlotte.”
For Jody, being able to receive more of Charlotte’s care closer to home has made an enormous difference. Fewer infusion changes mean less disruption to their days, giving the family more freedom to enjoy their time together and focus on the moments that matter most.
The new model is also building capability within the Northern Beaches Hospital paediatric team. Acting Paediatric Ward Nurse Unit Manager Rebecca Mirabito said the team has valued getting to know Charlotte and her family while expanding its experience with CADD infusion devices and subcutaneous infusion processes.
“A valuable learning opportunity for our paediatric nursing team.”
The clinical learning is important, but the biggest difference is being felt in Charlotte’s everyday life: fewer interruptions, more care delivered close to home and more uninterrupted time with the people who know and love her best.
Care centred on what matters most
Charlotte’s story shows how collaboration and a practical change in the way care is delivered can make a meaningful difference for a child living with a complex condition.
At the NORTH Foundation, we are proud to share stories that recognise the clinicians and health teams across the Northern Sydney Health District who are finding thoughtful ways to make care more flexible, connected and centred on patients.
Innovation in healthcare does not always mean a new medicine or a major piece of equipment. Sometimes it is a new model of care that reduces disruption, supports local clinical teams and gives patients and their loved ones more time for what matters.
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