Amelia’s Story

Our Granddaughter Amelia is 11 years old and is a beautiful, brave, loving, thoughtful young lady who has a very close bond to her parents and younger sister. Amelia has recently been diagnosed with an intracranial Germinoma cancerous grade 2 brain tumour on her pituitary gland, which has damaged her optic nerve severely affecting Amelia's sight and as a result of this has now been diagnosed with being severely vision impaired. This has been confirmed as irreversible, meaning normal vision cannot be restored and to start treatment as soon as possible to preserve the vision she currently still has. This has also led to adrenal insufficiency due to her pituitary gland now not fully working.

Amelia's story:

In August 2024 Amelia was complaining of a few headaches each week, so attended a routine eye test. The Optician noticed that Amelia had pale optic discs so was referred to an eye specialist at Colchester hospital. In January 2025 Amelia attended her appointment where she was diagnosed with bilateral optic nerve atrophy and an MRI scan was requested. Following the MRI scan result, Amelia was called into Colchester Hospital to have urgent blood tests and admitted to hospital for further tests and a more detailed MRI scan. The tests showed that she has adrenal insufficiency (also known as Addison's disease) this is where the adrenal glands do not produce enough hormones)

Amelia was then transferred to Addenbrookes hospital where she was there for 10 days and following blood tests and further MRI scans (including one on her spine) she was then diagnosed with having the tumour on her brain and discharged from hospital with the new medication to manage the adrenal insufficiency.

Following further tests of a lumbar puncture, ultrasound scan, full body x-ray and a CT head scan to help diagnose the tumour and check if there were any other signs of a tumour anywhere else in her body, although thankfully the results showed no further tumours in her body, it has revealed that cancer cells were found in Amelia's spinal fluid (CSF).

Amelia then had to have a biopsy on the tumour under general anaesthetic, this was a last resort that the Doctor's wanted to try and avoid.

Less than 2 weeks later, Amelia's parents received the devastating news that every parent would dread, that the tumour was a Germinoma tumour which is a rare cancerous brain tumour and due to where the tumour has grown, unfortunately doctors cannot remove it safely without causing further problems. Their world has just fallen apart.

A treatment plan has been put in place for Amelia which includes 6-8 weeks of weekly chemotherapy at Addenbrookes Hospital followed by 4-6 weeks of radiotherapy (proton beam therapy) at either a London or Manchester hospital. After which, scans will determine whether the treatment has been effective.

Amelia has recently started her journey with the first session of chemotherapy and, along with her mum, dad and sister have a long and extremely tough road ahead. Amelia has named the tumour "Edward" rather than using the C word.

We are starting this Gofundme page to try and raise funds to help with the necessary adjustments now needed to Amelia's family home so that she can try and lead as normal a life as possible at home where she should be able to feel the most safe. Also to help Mum and Dad with all the additional expenses of attending the hospitals such as Fuel, parking, train fares etc. and whilst still not being able to work full time or work at all since Amelia first went into hospital in March.

We would really appreciate your donation however small so that the family can concentrate on helping Amelia beat this life changing illness and not have the extra worry about current or future finances.

Thank you for taking the time to read this.

We love you Amelia very much.