Charity is a ray of light in the darkness of loss

Levi was a normal six-year- old boy who loved Power Rangers and parties. He had been under a consultant all his life for constipation (which we now know was associated with his tumour).

He started having recurring headaches in December 2005 and was waking up in the night to be sick, as well as having dizzy spells. We were told it was due to migraines, but I was very insistent that the doctors didn't leave it at that without first doing a CT scan – how could they know what was really happening inside Levi's head without looking?

I had my suspicions and felt like I wasn't being listened to. It was incredibly frustrating trying to get the paediatrician to really listen to my concerns and to really see Levi's symptoms. I had also started to do some research on the internet which came up with a possible brain tumour, just from typing in Levi's symptoms.

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Discussing this with Levi's paediatrician, he disputed my theory, as he was convinced that to have a brain tumour a patient would have to be suffering fits as well. Levi didn't think there was a point to taking the medicine for his "migraines" either, as they didn't work.

Finally, in July 2006, I managed to push them in to giving Levi a CT scan. It showed hydrocephalus. Fluid was blocking Levi's ventricles.

A subsequent MRI scan confirmed he had a brain tumour in the cerebellum and brain stem. I was absolutely devastated. I wanted to be proved wrong. I would have been so happy to have it confirmed that migraines were the cause of all his symptoms after all,

but sadly my suspicions

were right.

When the doctors showed me the images of Levi's brain, my whole world collapsed. I was incredibly angry that it had taken so much time for him to be diagnosed. It was almost surreal how life could change in an instant. We had been a normal family with a normal six-year-old boy. Now my precious son was facing a life-threatening operation.

We had no choice but to sign the form for Levi to

have surgery to debulk the tumour. Without it, he would certainly die, but the alternative of going ahead could also spell death, paralysis, stroke, and learning difficulties.

Levi survived his operation, but shortly afterwards he was back in intensive care with breathing difficulties – his breathing mechanism had been damaged by the surgery and he needed to be artificially respirated.

His lungs soon became very poorly. My little boy was unconscious and on a life support machine for six weeks. I stayed by his bedside willing him to survive even if he never came off the ventilator, nor stopped needing a feeding tube, had to live with learning difficulties, whatever. I wanted him to live.

I eventually, however, came to realise that the doctors could do nothing more for Levi, but I wouldn't let them switch off his life support. I said I wanted to leave it to Levi, we would follow his lead even though it would break our hearts. Then that time came. I kissed him and held him all night. Finally, they took out his breathing tube and Levi died in my arms, surrounded by his devoted and devastated family.

The grief was horrendous. The little boy we had loved so much and who had been a normal fun-loving child who adored Power Rangers, parties and never-ending hugs from us had gone. Our lives were shattered, our hearts smashed into a million pieces – how do you even begin to live without the one little person who you love more than life itself?

My memories of those six weeks will never go away. I can still hear the machines and remember my utter feeling of despair.

There was nothing I could do, but sit by his bedside.

A year after Levi's death we set up Levi's Star and we have already helped 25 children with brain tumours by funding things like holidays, a laptop, even a new set of pyjamas, in fact, whatever the child's needs are, we will try to fund. We also raise awareness about brain tumours and their devastating effects.

I am very proud of Levi's Star and the work that we do. It is also a way for us to gain a little bit of justice for our precious Levi. I feel very strongly that doctors should become much more aware of the variety of symptoms underlying brain tumours.

I know that a GP may only see one case of a brain tumour in his or her career, but that one case is someone's child, mother, father, brother or sister and they need to be diagnosed as early as possible to have the best chance of survival.

Brain tumour research

Last year, Levi's Star joined forces with 13 other charities to form Brain Tumour Research to raise awareness and demand better investment in research.

More children and people under the age of 40 die from a brain tumour in the UK than any other form of cancer. Brain tumours have overtaken leukaemia as the leading cause of cancer death in children.

Despite this, brain tumours receive less than one per cent of the national spend on cancer research in the UK and higher profile cancers generate more than 20 times the funding. Brain Tumour Research is supported by brain tumour patients Martin Kemp and Russell Watson, and Shelia Hancock, whose grandson Jack survived a brain tumour. Golfing legends Nick Faldo, Tony Jacklin and John O'Leary are also backing the campaign. Other celebrity supporters include Tim Henman, Sarah Beeny and Nicholas Owen.

Last week, Levi's mum, Vicky travelled to London to attend a special Speaker's reception when she met with Ed Balls who promised to raise the issue with the Health Secretary, and the Speaker, John Bercow.

"Nothing can ease the pain of losing Levi, but knowing that we are helping other children through Levi's

Star helps me to make sense of what happened," says Vicky, who lives in Wakefield with her five-year-old daughter.

At the weekend, Levi's Star organised an Easter party for children with brain tumours and a number of events are planned throughout the year, including a sponsored sky dive and charity ball. More than 50,000 has been raised to help children at the three Yorkshire Cancer Centres in the two years since Levi's Star was started.