Stories

Amber's Story

Amber's Story

School girl Amber Aziz felt suicidal at the age of nine after she was plagued with severe headaches and vomiting.

The family's nightmare began in 2014, when Amber started suffering with headaches and fatigue. Her worried parents, Zainab and Nadeem, were taking her to the GP at least once a month and at one point were even told that her symptoms could be put down to her being jealous of her little sister.

Amber repeatedly insisted she knew there was something inside her head and that she “wanted a new brain". Finally, in despair, she confided in her cousins that she wanted to throw herself under a car.

One day in April 2015, Zainab's sister-in-law Shabnum came round to see her, saying she had something she must tell her.

"Then she said Amber had told her cousins that she wanted to kill herself," said Zainab. “She'd told them; ''I want to throw myself under a car.'

“I felt sick and thought; 'I am a really bad mother.' How could I not have known that my nine-year-old daughter was in such despair that she was talking about killing herself?

“And I felt powerless that we couldn't get her the help she needed. No one was listening to us. We all felt let down, but especially Amber."

A month later, they noticed that Amber was struggling to read. They took her to the optician, where tests showed it was cloudy behind both eyes and they were told to take her to the hospital.

Further tests in hospital revealed she had a genetic condition cerebrotendinous xanthomatosis (CTX), which means you can't break down certain fats properly which means they accumulate in the body and brain.

In June 2015, after undergoing an MRI scan, the consultant broke the news….

“I am sorry," he said. “But your daughter has a brain tumour."

“Amber started screaming. 'I told you there was something in my head. Now they're going to cut my head open.' “, said Zainab. “ I'll never forget the fear in her eyes."

Amber underwent an eight-hour operation to remove the tumour. The surgery was a success and the whole tumour was removed but she still suffers side effects like fatigue and sometimes finds it hard to get her words out due to delays in her cognitive development. Amber also sees a counsellor as she suffers from bouts of depression, a symptom of CTX.

Although she is now partially sighted, Amber is doing well and is back at school full-time.

We are backing HeadSmart because – as we know all too well from Amber’s ordeal – it’s vital to raise awareness about children’s brain tumour symptoms for earlier diagnosis. I just wish we’d known about HeadSmart for Amber –she is our inspiration and a very brave little girl.

- Zainab, Amber's mum