IN MEMORY OF SENA STOJANOSKA

In Memory of My Mum, Sena

Hi everyone,

I’m fundraising in loving memory of my beautiful mum, Sena Stojanoska, who sadly passed away on 7 October 2026 after a long and incredibly difficult battle with complications related to NF1.

Mum lived with NF1 throughout her life and had a shunt in her brain to help manage hydrocephalus. In 2024, she went through three operations to repair blocked shunts.

Unfortunately, Mum’s biggest battle came when doctors discovered an NF1-related glioma on her brainstem. In 2025, scans showed that the tumour had started to grow. From then on, Mum underwent regular MRI scans, with each one showing that the tumour was continuing to increase in size.

Earlier this year, doctors tried chemotherapy in the hope of slowing or stopping the tumour. Sadly, it was unsuccessful. A few months later, Mum underwent radiation therapy in another attempt to control its growth. Because of the tumour’s location on the brainstem, surgery was not an option.

As the tumour continued to progress, we watched Mum’s quality of life slowly change. She experienced increasing problems with her balance and coordination, changes to her eye movements and vision, confusion and eventually significant difficulty swallowing.

Three weeks before she passed away, Mum was admitted to hospital with pneumonia. We later learned that the tumour had affected her ability to swallow, causing food and fluids to go into her lungs. Sadly, there was nothing further that could be done to treat the tumour.

Mum was transferred into palliative care, where our family spent her final weeks by her side.

Watching someone you love deteriorate over weeks, knowing there is nothing more that can be done, is something I don't think any family is ever prepared for. Mum fought incredibly hard through everything she faced, and she never deserved the suffering that this disease caused her.

Mum passed away peacefully surrounded by her family. While we are devastated by her loss, we want to honour her life by doing something positive in her memory.

That is why I have chosen to raise money for the Flicker of Hope Foundation

NF1 has been such a significant part of Mum’s life and our family’s journey. I hope that by raising money in Mum’s memory, we can help support the work of Flicker of Hope and, in some small way, help other families affected by NF1.

If you are able to contribute, no matter how small, we would be incredibly grateful. If you aren't in a position to donate, sharing this fundraiser or leaving a message of support would also mean a great deal to us.

Thank you for supporting Mum, our family, and the Flicker of Hope Foundation.

Rest peacefully, Mum. We love you and we will miss you forever.

— Sime