Nia and Amelie met in October of 2023, not in school like most 5 and 6 year olds do, but in the waiting room of a Radiotherapy department in a Birmingham hospital.

Both were there to begin cancer treatment.

Nia, having been newly diagnosed with a diffuse midline glioma (DMG), was to receive targeted treatment to her tumour which had wrapped itself around her brain stem.

Amelie was there to have cranio-spinal irradiation (CSI) to treat a brain tumour which had come back again, less than a year from first being diagnosed, resected and irradiated.

Nia began experiencing headaches, in September 2023, over the course of 11 days and after 3 dismissed trips to the doctors, she was finally seen in A&E where she was scanned and given the catastrophic diagnosis. Her parents were told she may not survive the night and to prepare for the worst. Nia was fitted that night with a VP shunt to regulate her spinal fluid and in true ‘Nia style’ came out smiling the next day. The best, cheekiest smile in the world! DMG carries a life expectancy of just 8-12 months and with this in mind, she, with her family, embarked on a 6 week course of radiotherapy before being placed on an experimental drug trial which was brought to her from America.

Amelie’s tale, although similar, has been going on for over 2 years now. She was diagnosed with a brain tumour in her fourth ventricle, 5 days after her 4th birthday. She presented with random, yet effortless, vomiting which persisted over the course of 6 weeks. Multiple trips to hospital resulted in the misdiagnosis of stomach bugs, concussions etc. by the time the hospital agreed to scan her, she was vomiting, unable to walk and she was drifting in and out of consciousness. She underwent a 17 hour long surgery to remove the tumour and we were warned of the very real risk of Posterior Fossa Syndrome.

Over the course of the next three months Amelie was fitted with 3 VP shunts, had multiple trips to PICU and had to relearn to walk, talk and breathe again on her own. She was sent to Germany at the end of October 2022 to WPE to receive Proton Beam Therapy (PBT) as the NHS could not meet her needs quickly enough. Despite all of this, Amelie’s tumour returned in the summer of 2023, this time in a new location which enabled her to receive a second course of radiotherapy. This time to her entire brain and spine, this procedure carries risks and side effects yet was her only, final option.

Nia and her family bravely battled her disease until it took her, much too short, life in July of this year.

She was just 7 years old.

Amelie continues to battle her condition whilst suffering from life altering complications. She undergoes 3 monthly surveillance scans and tries to continue as normal a life as possible. Her consultant feels she will never see a cure.

Neither of the girls had the option of chemotherapy as there just isn’t anything that works.

Only through research is there going to be any hope of finding a cure. To that end, Amelie, with us (her family) and Nia’s mum, are taking part in this year’s ‘Walk of Hope’ at Chatsworth house on 28th September to raise money for Brain Tumour Research, a cause far too close to our hearts. It’s also quite a feat for a child that can’t walk without a frame!

We would be most grateful for any donations/sponsorship in honour of Amelie and in memory of beautiful Nia in the hope that in the not too distant future, a diagnosis like theirs won’t be a death sentence.