Cure Brain Cancer Foundation and Peace of Mind Foundation are proud collaborative partners of the National Advocacy Service (NAS), which directly assists families with accessing support services including the National Disability Insurance Scheme (NDIS), Centrelink and other government programs.
The service also provides access to counselling care and practical resource tools that give families the support they need, when they need it the most.
In 2023-2024, over 450 families were supported by the program
Families like the Darvell’s, who, because of support from NAS, were able to navigate the complex NDIS system and secure essential services for their son Henry, who was battling brain cancer.
Henry’s Mum Alex contacted the National Advocacy Service in January 2023 following Henry’s diagnosis of Atypical Teratoid/Rhabdoid Tumour (ATRT) in June 2022.
As well as caring for a terribly unwell Henry, Alex and her husband Mark were also parents to three more children – Ava (then 8), Thea (then 5) & Teddy (then 21mths). The family were in desperate need of support.
“The space the team of NAS Advocates routinely find themselves in is one of a comfort provider. The overarching sensation to the families we serve is one of ‘I’ve got you!’ Alex was one of those clients. We could clearly see she just needed someone to hold her close and help guide her. We were there to step in when appropriate and step away when there was space and healing time needed.”
Fiona Hassmann
Client Support Manager, National Advocacy Service
Alex initially required support with Centrelink navigation. Henry already had an NDIS plan that had been put in place by his medical team. NAS worked with the family to resolve the Centrelink concerns, but it was clear that Henry’s existing NDIS plan was insufficient, and the team worked towards developing evidence for a review of this plan.
“From this point onwards, Alex was officially under my wing. She would check in for reset phone calls, when her days were simply too overwhelming. We commenced working towards building an NDIS pack of evidence to provide for the purpose of a review. Our service sourced independent Occupational Therapists with the expertise of brain tumour needs, compiling evidence for not only his current needs but equally for those that were coming to his little body, and his family.
I worked solidly with Alex, coaching her into accepting supports into the home and guiding her through how to find that sweet spot between comfort, support and privacy – it’s not an easy place to find in such a busy household,” says Fiona.
From March to July 2023, Henry’s condition became increasingly worse
On 22 July, following an unusually long nap, Henry woke and was no longer able to hold his head weight. An MRI soon found that little Henry’s brain had necrosis impact from his radiation treatments – the family were devastated. He was placed on a drug called Bevacizumab, but sadly this did not improve his function.
He was now facing daily life with an inability to sit up, hold his body weight or move in his wheelchair. He was now predominantly laid on the floor or in his bed. The emotional burden and devastation to the family was heartbreaking.
A meeting was held with the NDIS in September 2023, aimed at revisiting Henry’s earlier poorly provisioned funding. Alex, unable to attend, proxied Fiona in to do the meeting on her behalf.
“This is an example of the level of trust we build with families,” says Fiona. “I was able to have open conversations about the family’s needs and take with me a solid understanding of just how much they were enduring. This layered with evidence enabled me to secure appropriate funding for the family.”
Henry’s plan was not approved until October 2023. His funding was not only tripled from his original plan, but a healthy core budget was provisioned to enable greater support work into the home to assist Alex and Mark and their young family.
Henry never got to use his new NDIS plan
On 3 November, Henry Hugo Darvell passed away. The continued devastation of the necrosis to his little brain slowly took all that was left of him, away.
“Alex and I were talking, right up until the day before his passing – comforting, guiding and listening. An extremely strong-willed woman brought to her knees with devastation for her child,” says Fiona.
“Fiona’s guidance helped me navigate the complex NDIS system and secure essential services for Henry’s wellbeing. Without her, I would have struggled immensely to access the support network that was vital for his care and quality of life.
Fiona’s dedication and compassion made a profound difference in our lives, providing us with the strength and assistance we needed during an incredibly challenging time.
The National Advocacy Service is truly an essential service for anyone who is navigating a brain cancer diagnosis, and we are so incredibly grateful to have had the support we did.”
Alex
Henry's mum
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