THIS year more than 500 mums and dads will be told their child has a brain tumour.

While relatively rare, the impact the disease has on young lives can be immeasurable.

Reporter JAMES COX talks to the families affected.

 

JAMES Copping is a cheerful, lively and inquisitive little boy.

His friendly and playful demeanour belies the fact that, just months ago, surgeons removed a squash ball sized tumour from his brain.

When I visit him at his Kelvedon home, James, three and a half years old, is playing noisily with a huge train set that his dad bought for him at the critical peak of his life-saving treatment.

“James is a good news story with a happy ending,” his mum, Natalie Copping, 32, says.

“We have been incredibly lucky, but not everyone is."

Those tell tale signs emerged just last August when James suddenly screamed out in agonising pain.

“He was saying his head really hurts,” Natalie remembers.

“He’s never really cried like that before so, instinctively, I felt something was wrong.”

A few weeks later the headaches had reoccurred and his parents noticed his head was leaning to one side.

The toddler began having trouble with his balance and nursery staff started noticing the slanted head and headaches.

“You start thinking ‘perhaps he’s always stood like that and we haven’t noticed,” Natalie says.

“We even went through old photos to check.”

Eventually the doctor referred James to Colchester General Hospital.

An urgent MRI was scheduled to last just 20 minutes, went on for more than an hour.

“I could see in the faces of the doctors that something was wrong,” remembers dad, Jonathan Copping.

James was diagnosed with a brain tumour. The young parents’ world fell away.

“You hear those words, brain and tumour, and can the worst,” Jonathan added.

Despite an initially grim diagnosis, surgeons expertly removed 100 per cent of the tumour and tests revealed it to be benign.

It sparked a painful road to recovery.

“When James first come home I wondered how the surgery had affected him, whether he was still our James,” Jonathan added.

“I did tests, hearing tests and asked him questions. He is responding really well. It was tough for him at first but he can communicate really well and there is unlikely to be any after effects.

“It’s made us appreciate, and spoil him, even more than we did.”

Back home, James is on the road to recovery and the families message is clear.

“We want to raise awareness and make people look out for the symptoms,” Natalie says.

“We have met families who needed twelve trips to the GP before they got a diagnosis, but we want parents and doctors to be more aware of brain tumours.”

There are plenty of reasons for the family to be optimistic in 2015. James continues to get stronger and his traumatic surgery becomes a footnote in his happy life and Natalie and Jonathan are due to get married in March.

DANNY GREEN FUND

THE first sign that something for Danny Green was wrong was a dizzy spell after playing football.

The sporty, energetic 10 year old came home from school and complained his head was spinning since the kick around.

His parents, Chris and Lisa from Canvey, sent him to school the next day but started taking notice when he complained of head aches and started being sick.

“It was like a bolt out of the blue,” says Chris.

“At first we just thought he was dehydrated, then he started being ill.”

An MRI confirmed the family’s worst nightmare. Their beautiful little boy had a brain tumour.

“At that moment our world caved in, and it has never been the same since,” Chris adds.

“The things we saw and went though will stay with us forever.”

He was transferred to Great Ormond Street Hospital and had an emergency operation to relieve the pressure on his brain.

The next day Danny had an operation to remove as much of the tumour as possible.

But the procedure left him with Posterior Fossa Syndrome, rendering him mute, unable to swallow, with weakness in his left side, unable to hold his head up or walk.

“Luckily, with intense physiotherapy, Danny eventually overcame most of these problems and just needed support with balance, and was able to walk with the aid of a walking frame,” Chris says.

“A week later we were told the tumour they had removed had grown back as it was so aggressive.”

It had also spread to his spine and emergency chemotherapy only irritated the growth.

Whilst fighting for his life in intensive care, his family were TWICE told he would not make it through the night.

“Danny was a fighter,” his dad says.

“He never once moaned or cried about his treatment. He amazed staff with his fight and determination.

“He was always singing. His progress was amazing.”

His MRI scans started to indicate the tumour was shrinking.

During the last round of high dose chemo, Danny got pneumonia and a virus and ended up back in intensive care, struggling to breathe. He was put on a ventilator and after nearly two weeks lost his fight for life in July 2012.

“Our hearts are broken, and can never be repaired,” Chris says.

“To lose a child is unbearable, and it should not happen. It seems so long since we have seen Dan.”

From this tragedy sprang a new determination to help other families and children suffering with the same disease and Posterior Fossa Syndrome.

The Danny Green Fund is now a popular independent charity, raising funds and awareness, and assisting the recovery of children suffering from the after effects of brain surgery.

“We wanted to remember his name and when we discussed with his doctors what we wanted to do they said it was a great idea,” says Chris.

“We are the only charity in the UK focusing on Posterior Fossa Syndrome, which can occur after surgery or if the tumour pushes into the brain.”

The Danny Green Fund helps pay for physiotherapy, hydrotherapy and other treatments for children in various hospitals.

It has supported the Brain Tumour Charity by inviting representatives of the charity to a parliamentary reception, where 34 MPs signed a pledge board to help raise awareness in their constituencies.

Their fight to get the proportion of Cancer Research UK funding for brain tumours raised from one per cent is backed by their MP Rebecca Harris.

For more information visit www.thedannygreenfund.org.uk

SYMPTOM GUIDE, by age group: *If your child has one of these, see your doctor If two or more, ask for an “urgent referral”.

Under 5s / preschool: - Recurrent vomiting - Balance, co-ordination, walking problems - Abnormal eye movements - Behaviour change, particularly lethargy - Fits or seizures (not with a fever) - Abnormal head position such as wry neck, head tilt or stiff neck

Children 5 - 11 years old: - Persistent headache - Recurrent vomiting - Balance, co-ordination, walking problems - Abnormal eye movements - Blurred or double vision - Behaviour change - Fits or seizures - Abnormal head position

Young people, 12 - 18 years old: -Persistent headache - Recurrent vomiting - Balance, co-ordination, walking problems - Abnormal eye movements - Blurred or double vision - Behaviour change - Fits or seizures - Delayed or arrested puberty, slow growth

FACTS AND STATS

• Brain tumours are the biggest cancer killer of children and adults under 40 • Less than 2 per cent of the cancer research funding in the UK is spent on brain tumours • Every day 25 people in the UK are diagnosed with a brain tumour • More than 9,300 people are diagnosed with a primary brain tumour every year, 500 of which are children and young people • 60 per cent of people diagnosed will die within one year • Brain tumours reduce life expectancy by, on average, 20 years - the highest of any cancer • Over the past forty years the number of people who survived for five years after a leukaemia diagnosis more than trebled. The number of people who survived for five years after a brain tumour diagnosis has not even doubled.

For more information visit: www.thebraintumourcharity.org