Rummaging through the larder, Nora, 3, dives in for a small packet of raisins and smiling triumphantly she pops one into her mouth.

The doctor told me if we had walked into his office two years earlier, nobody could have done anything to save Nora

Clambering down from the stool, she hangs on to her mother’s hand and refuses to let go, crawling through the rooms like a permanent shadow.

Her mother, Joanne Buttigieg, jokes that she can never get away, but she relishes the bond she has with her second-born, reinforced after a year spent in hospital where Nora battled to survive atypical teratoid rhabdoid tumour (ATRT), a rare, very aggressive brain tumour, and the ravaging effects of cancer treatment.

“I don’t want people to think she’s a victim. For me Nora is a hero for being a survivor,” she said.

Ms Buttigieg, 37, decided to share her story with The Sunday Times to raise funds for the Children Brain Tumor Research Foundation, a non-profit organisation supporting research on rare malignant childhood brain tumours.

“The doctor told me if we had walked into his office two years earlier, nobody could have done anything to save Nora. Some people think Nora is unlucky, but in our eyes she is very lucky. If it weren’t for the few years’ research they had done on ATRT before Nora was diagnosed, she wouldn’t have had a chance to survive,” she said.

It all started when Nora was about 16 months old and started walking with her head tilted. A paediatrician believed it could be a pulled nerve, and nobody was particularly concerned. Except two days later, after a wonderful family day out, Nora started to vomit.

At hospital, medics thought she was constipated, but Nora was rocking herself in pain, and slept through the X-rays. Back home she slept through the day and when they tried to wake her up she did not respond. The little girl was in a coma.

Numerous scans and tests established she had a tumour and Nora had to undergo a nine-hour operation. Just before, the doctor gave three scenarios – Nora could either be disabled for life, she could die, or she could live.

Lowering her voice, Ms Buttigieg admits she is not religious, but she spent those nine hours praying with her mother. The operation was a success, but Nora’s battle had only just started.

Four weeks later the biopsy results of the tumour arrived from the Mayo Clinic in the US – Nora had ATRT and doctors knew of no survival statistics.

“They basically told us we had a dying child... You kind of switch into robot mode; nobody mattered and I focused on getting my child back,” she said.

No matter how dire doctors told her the situation was, it was as if Ms Buttigieg’s brain was processing a different message.

“Nothing sank in. I always believed she would be fine. I heard the words, but I was convinced there was a way out,” she said, laughing at her determination.

Ms Buttigieg and Nora flew to Great Ormond Street Hospital in London where the oncologist proposed treatment that had yet to be certified as the official European ATRT protocol.

Nora underwent six blocks of chemotherapy, 30 days of focal radiotherapy, high-dose chemotherapy and two stem cell transplants.

Her immunity drastically lowered and she was constantly developing infections.

What nearly killed her was the high-dose chemo that was so severe it “burnt” her internal system and made her bleed profusely – 400ml to 700ml at a time.

Nora ended up on life support, and doctors started preparing Ms Buttigieg for her daughter’s death. Again, she failed to register this, and not even psychologists managed to penetrate her conviction that Nora would live.

“I was the annoying mother. I told them to stop saying Nora was going to die and made it clear I was not going to switch off her life support. Nobody has a right on Nora’s life and I knew she’d wake up,” she said.

As Nora lay in a coma, Ms Buttigieg waited, washed her, read to her and told her about the great summer they were going to have back in Malta.

“Thirty days later, Nora woke up and threw herself in my arms, gazing at me with a smile. It was the best moment of my life; my baby was back.”

Finally in the clear, doctors said she could return to Malta. To be on the safe side Ms Buttigieg decided to stay in London an extra month.

Three weeks later they were back in hospital. Nora was diagnosed with encephalitis – acute inflammation of the brain – which doctors believed was caused by radiotherapy.

The chemotherapy also damaged 80 per cent of her hearing.

“That night Nora lost her mobility and speech. In a way it took away Nora,” she said, sighing wistfully for the first time.

But she is quick to regain her positive outlook and points out that the radiotherapy damage is reversible.

With the right therapy, Nora is working to reach her full potential.

She has progressed tremendously in the past year, but Nora requires growth hormone injections every day that come with the fear that they can reactivate the cancer.

“When Nora was diagnosed, the first question I asked was, why did it happen to us? And my mother said, because we are like everyone else.”

­How you can help

Joanne Buttigieg and her partner Douglas are raising funds for the Children’s Brain Tumor Research Foundation, which is working to identify and fund treatments that are less aggressive, plus reach out to parents whose child may be diagnosed with ATRT.

“Research is the only way forward to help these children and give them a chance to live,” Ms Buttigieg said.

To donate directly to the foundation go to: http://www.firstgiving.com/fundraiser/joannabuttigieg/jodougsfundraisingpage