Hi everyone,

I never imagined I would be in a position where I needed to ask for help like this, but after more than a decade of suffering and searching for answers, I am now trying to raise $100,000 AUD for specialised brain surgery to remove a 17.6mm pineal cystic mass.

My health struggles began when I was just 12 years of age in 2012. Since then I have experienced ongoing neurological symptoms that have severely affected my daily life. In 2013, I was first told my symptoms were related to an MV malformation, and later they were dismissed as migraines. Despite my health continuing to deteriorate over the years, the true cause was overlooked for more than a decade.

In late 2024, after a significant decline. I was finally told that I have a large pineal cystic mass that has been missed and or unreported for over a decade.

By the time it was properly identified, the cyst had already begun blocking the normal flow of spinal fluid in my brain (Aqueduct) causing me serious complications. I have since undergone VP shunt surgery to relieve the pressure and divert the fluid, but this has not resolved the underlying problem. The cyst itself stills remains, and I continue to struggle with ongoing symptoms and the uncertainty of what the future holds if it is left untreated.

Living with this condition has been physically and emotionally exhausting. It has impacted my ability to work, function normally, make plans for the future, and simply live life without constant fear and pain. After years of being dismissed and searching for answers, finally understanding what has been happening has been both validating and heartbreaking.

Unfortunately, access to treatment for pineal region masses in Australia remains extremely limited. Due to the complexity and high-risk nature of surgery in this area of the brain, many patients struggle to find specialists willing or experienced enough to operate.

As a result, Australians with pineal cysts and related lesions are often left with very few options, either continuing to live with debilitating symptoms or seeking highly specialised care overseas at an enormous personal cost.

For many patients like myself, this has meant years of suffering, delayed treatment, worsening neurological decline, and the emotional toll of fighting to be heard and taken seriously. While advances in pineal region surgery are being made internationally, access to that level of treatment within Australia is still incredibly difficult/unavailable for many people facing these conditions.

After extensive research and consultations, I have been given the opportunity to pursue surgery with Dr Charlie Teo in China. He is one of the few neurosurgeons experienced in operating on complex pineal region cysts. This surgery could give me the chance to finally address the root cause of my condition and reclaim my quality of life.

Unfortunately, the costs involved are far beyond what I can manage alone. I am trying to raise $100,000 AUD to cover:

• Neurosurgery and hospital costs

• Travel to China

• Accommodation and recovery expenses

• Medical imaging, consultations, and follow-up care

• Time away from work and ongoing medical needs

Asking for help like this is incredibly difficult, but after everything I’ve been through, I know I cannot do this alone.

Every donation, No matter how small brings me one step closer to accessing this potentially life changing surgery. If you are unable to donate, simply sharing my story could make a huge difference.

Thank you for taking the time to read my story, for believing me, and for any support you are able to give. Your kindness and compassion mean more than words can ever express.

With gratitude,

Sophie