Raising funds to help my grandaughter Lillian, a 6 year old girl, access removal of her pineal cyst and pineocytoma in China.

Fundraising on behalf of my daughter & son in law Taryn & Cameron Johns (Brian & Edwina Johns son)

Their story below:

If you know us, you know we are very private people.. but this is a story we feel we need to share. If it does anything, let it spread some awareness of what many families are currently facing within the Australian medical system. We hope no other families are forced to look for medical treatment outside of their own country.

At around 18 months old, our daughter Lillian was diagnosed with what we were told was a “pineal cyst with solid components” on her pineal gland after we noticed difficulty with her upward eye gaze and being referred further by her ophthalmologist. The pineal gland itself is located in the centre of your brain.

We were relieved when it was confirmed that it was benign, and we trusted the health system when they told us there was “no change” and to simply return for yearly MRIs and follow ups.

Year after year, we were met with the same response: “It’s just a cyst with no growth, it’s asymptomatic, we can’t determine what the solid lesions are, we will keep monitoring annually with MRIs'. Basically - See you next year, for 5 years so far.

But as parents, we knew something wasn’t right.

Lillian continued struggling with symptoms that were seemingly dismissed — daily nausea, headaches, mood swings, eye issues, pain and discomfort and neurological symptoms, assured there was nothing to worry about with the ‘cyst’ and over the years we tried gut health, supplements, allergy testing, diet changes, etc. trying to find something to ease the symptoms she was experiencing with no real luck.

So I did what any mother would do.

I researched, obsessively.

Medical journals, support groups, stories from other families and people with the same diagnosis, contacting other Neurosurgeons privately (unwilling to assist), podcasts - the lot. I’m not a doctor — I’m just a mum trying to help her child and connecting the dots.

That research eventually led us to Prof. Charles Teo who willingly took Lillian on as his patient and reviewed her annual scans.

After reviewing her scans and history, he confirmed that this is not just a harmless asymptomatic cyst. It is multiple cysts and a suspected pineocytoma that has changed/grown over time and can be directly linked to her upward gaze palsy and very likely explains nausea, headaches and neurological symptoms.

Hearing those words was devastating, but also validating. For years we felt dismissed but now we had some better clarity and understanding.

Now we are faced with the main challenge.

Unfortunately access to treatment for pineal region masses is very limited and as a result many people in Australia are left without help. This likely is why we have gone so long without clear answers.

The surgery she needs is not available to us in Australia with Prof. Teo involved, despite him giving hope and options to so many families when others won’t. Charlie is one of very few who are experienced enough to operate on pineal region cysts and tumours.

Because of this, we are now looking at the opportunity of travelling to China for life-changing brain surgery within the next few months.

The estimated cost of surgery/post op care in China is between $70,000-$80,000 AUD, none covered by Medicare.

This does not include travel, accommodation, time off school and work to care for Lillian and also looking after our other two children during this process.

Anyone who knows us knows that we don’t ask for help (especially me!) but now we are hoping for help to give Lillian the chance she deserves at some relief, healing and a future without pain or potential long term issues.

A chance to remove the tumour in the hands of one of the best.

As hard as this journey has been, if we had continued accepting “wait and see,” the long-term outcome for our daughter could have been far worse as she grows older, with little to no chance of having the tumour removed.

A donation, a message and prayer or a simple share of this fundraiser means more to our family than words can express. Times are tough for all families at the moment but even a small donation of a morning coffee will make a big difference for us and won’t go unnoticed.

Thank you for standing beside us in the hardest chapter of our lives.

Charlie Teo Foundation