A FAMILY who sadly lost their son to neuroblastoma is supporting a charity’s appeal to raise £15,000 to go towards research to help children with this devastating illness.

Hove couple Colleen and Matt White are sharing their story to help Horsham-based charity Action Medical Research to fulfill this goal.

The couple’s son Felix died at aged six from this rare but fatal illness.

He passed away on August 23, 2011.

Around 100 children each year in the UK are diagnosed with neuroblastoma, which is a type of cancer that grows on nerve tissues.

Most children are under five when they are diagnosed with this disease.

Matt said he hopes there will be a cure for neuroblastoma one day.

He said: “Leukaemia was a major killer 20 years ago and due to investment in research, the prognosis for many is good.

“Our hope is that this knowledge and research in invested in neuroblastoma.

“This research planned is a well thought through approach and, because it’s in the UK, it’s giving an option to UK children who are fighting this terrible disease.

“As many trials as possible are needed, as you can’t treat all children with neuroblastoma the same.

“These incredible researchers are dedicating their lives to helping find a cure to help children like Felix beat this devastating disease in the future.”

Treatment for children with high risk neuroblastoma is gruelling and sadly they may still lose their lives.

This includes chemotherapy, radiotherapy and surgery.

Matt is a trustee for Solving Kids Cancer, a charity that played an important role in the family’s journey fighting neuroblastoma after Felix was diagnosed aged four, on Valentine’s Day 2009.

Felix had to endure an aggressive treatment regime that included chemotherapy, multiple surgeries, radiotherapy and a stem cell transplant.

It was heart-breaking for his parents to watch their little boy in pain and losing so much weight.

Matt recalled: “While his twin brother was growing, Felix was shrinking.”

His parents described him as their “beautiful baby boy” who was loving “with a wise head for someone so young”.

When Felix was four, he told his parents his back was hurting.

They were concerned but they did not think it would be serious. They took Felix to the doctor who told them they did not need to worry.

However, when Felix told the couple that his back hurt whenever he laughed, Mr and Mrs White took him back to the doctors.

They were shocked when doctors found a mass in Felix’s abdomen and they were advised to take him to the hospital.

Matt said: “Our life completely changed that night.

“Felix was diagnosed with high-risk, stage four neuroblastoma.

“We didn’t realise what neuroblastoma was and we’d never heard of it.”

Since that very day, Felix had battled long and hard against the cancer.

Felix had been having pioneering treatment at a US hospital to try to control his neuroblastoma.

The youngster had spent more than two and a half years fighting the disease in the UK and Germany.

He suffered a relapse in January and had travelled to the US with his parents, his twin brother Elliot and his sister Grace, to undergo more treatment.

Felix’s long, and brave battle against cancer touched the hearts of many people and he was named one of the winners of a Child of Courage award at the Argus Achievement Awards.

Residents paid their tributes to the courageous child, and comedians organised a fundraising show at the Theatre Royal in Brighton after meeting Felix.

They were impressed by his resilience.

Other celebrities including Michael McIntyre, Ronnie Corbett and Jason Manford were also on stage and the event raised more than £60,000.

The family held a celebration service of his life at a church in the US, which was followed by a cremation.

Matt said throughout his little’s boy therapy, Felix remained cheerful and happy.

He said: “He just wanted to be at home, playing with his brother and sister. Felix’s fortitude gave us strength.

“We focused on making hospital appointments as fun as possible for Felix, his identical twin brother Elliot and big sister Grace.

“Colleen put bunting up in our hospital rooms and arranged an Easter egg hunt, things like that.

“We tried to make going to hospital as fun as possible.”

Matt and Collen recalled the night when Felix earned his angel wings.

Colleen said: “We gathered around his bedside, talking to him, holding his hand, kissing him and telling him we loved him. Something he already knew without a doubt.”

To help the research, head to action.org.uk/cancer and find more information.