And no-one knows this better than Lucy and William Clare who at their East Harting home, saw their eldest child – bright, energetic eight-year-old daughter Rosie – reduced to a tired, sick little girl in the space of about two months.

With her illness at first dismissed as just a virus, it took five visits to the doctor before it was discovered Rosie had a brain tumour.

Thankfully surgeons were able to remove the entire tumour and now, four years later, she is a healthy, happy 12-year-old.

The Clare family's story is one of many across the country and now the UK's biggest brain cancer charity is calling for more funding to fight brain cancer in this country, often dubbed the 'forgotten cancer'.

The Samantha Dickson Brain Tumour Trust is calling for a review of cancer research investment.

Its campaign is backed by evidence of what the charity claims is a 'funding trap' where brain cancer receives a fraction of the finance given to other cancers.

Paul Carbury, chief executive officer of the charity, claimed research had shown that in Britain the medical profession took around three times longer to diagnose a paediatric brain tumour than in countries such as Poland, Mexico and the United States.

Rosie has designed and written a leaflet which is aimed at helping families understand what is involved in the trauma of being diagnosed with such a serious disease and talks about radiotherapy and chemotherapy through the eyes of a child.

Looking back, Rosie says she noticed her handwriting was getting 'wobbly' around her eighth birthday in May, 2004.

"But it wasn't until we went to Spain at half term in October that we really began to notice Rosie wasn't well," said Mrs Clare.

"She started waking up every morning very sick and she was very tired."

When they returned to England Mrs Clare took her to the doctor: "We were told she had a 'sick bug' at first, but the following week we went back because she was worse.

"November was a very bleak month. Rosie wasn't in school most of the time because she felt so sick."

By this time Rosie's teachers at St Mary and St Paul School in Harting had picked up her wobbly writing. "Rosie was lacking enthusiasm and had lost her sparkle," said Mrs Clare, "and we were starting to get concerned."

But when she then developed headaches, the Clares were told she had a head virus.

"As parents you don't want to look at the scarier picture and if you are told by doctors that your child has a virus, you really want to accept it," said Mrs Clare.

Then Rosie fell over during rehearsals for her Christmas play at school and she was starting to get clumsy.

On Friday, December 3, Mrs Clare took her to the doctor for the fifth time.

"When she asked Rosie to stand on one leg, she couldn't – she couldn't do any of the coordination tests."

Hours later Rosie was in St Richard's Hospital undergoing tests.
"I just wanted them to tell us what was wrong," said Mrs Clare.

"We were shellshocked to find out it was a brain tumour – we had very little awareness of the disease, particularly affecting children."

By Saturday Rosie was in Southampton Hospital's neurological ward and three days later she underwent a successful operation.

Rosie then endured six weeks of radiotherapy and a year of chemotherapy, spending little time at school. But she and the whole family received tremendous support from staff and friends at the school throughout Rosie's treatment.

Mrs Clare paid tribute to the support of the Samantha Dickson Trust, 'who gave us fantastic support', and to the Snowdrop Trust whose nurses and specialists helped the family.

She stressed the importance of funding to speed up diagnoses and to help research less-aggressive methods of treatment.

The opening of the new brain tumour research unit at University College in London, funded by the charity, was a major step forward, said Mrs Clare, and would enable higher funding and more research into the disease which is now diagnosed in 450 children every year.

For more details of the work of the Samantha Dickson Brain Tumour Trust, visit the website.

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