Blog: Amber’s story

Imagine the anguish of being told your nine-year-old daughter wants to kill herself. That's what Zainab faced as her daughter, Amber was driven to despair by her undiagnosed brain tumour.

“Our nightmare began two years ago. Amber started suffering severe headaches, fatigue and bouts of vomiting.

Over the next seven months, we took her to a GP at least once a month.

We were told she was depressed and anaemic. One doctor even said she was just jealous of her little sister Marissa. But Amber told me repeatedly; 'I know there's something in my head, Mummy.'

At one point, she was vomiting seven or eight times a day. She was too tired to play with Marissa.

One day, my sister-in-law told me Amber had confided in her cousins that she wanted to kill herself. 'I want to throw myself under a car,' she'd told them.

I felt sick. My first thought was; 'I must be such a bad mother.' How could I not know that my nine-year-old daughter felt suicidal? I felt powerless that we couldn't get her the help she needed. No one was listening to us. We all felt let down. Especially Amber.

We noticed her holding her books close up to her face. An optician told us it was cloudy behind her eyes and to take her to an eye clinic.

Tests showed she had cataracts caused by a genetic condition cerebrotendinous xanthomatosis (CTX).

Last June, Amber had an MRI scan.

As the consultant took us into a side room, we assumed he was going to explain CTX to us. But there was far worse news. 'I am sorry,' he said. 'Your daughter has got a brain tumour.'

Amber screamed; 'I told you there was something in my head.' I'll never forget the fear in her eyes.

We were numb with shock. You don't expect to be told your child has a brain tumour.

Four days later, she had an eight-hour operation. All we could do was wait and pray she'd make it. We were so relieved when surgeons removed the whole tumour. Biopsy tests showed it was a benign astrocytoma.

Amber is now doing well and back at school full-time. I love hearing her giggle again and watching her play My Little Ponies with Marissa. But she is partially sighted and still suffers side effects like fatigue and speech problems.

It's vital to speak out so people know what it's really like for a child to live with a brain tumour and the devastating impact on the whole family.

I feel guilty that Marissa didn't get enough attention as we tried to get help for Amber; but now we focus on the positive.

Most of all, we cherish every day together."

Amber, now 10, is featured in our report Losing My Place: The Reality of Childhood with a Brain Tumour which is based on a survey of almost 300 young people and their parents following a childhood brain tumour diagnosis.