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Feature: 13-year-old cancer fighter Bailey unafraid of future after surviving 15th operation

By AWalmesley  |  Posted: January 09, 2014

  • Bailey Fettis, 13, suffers from a rare inherited disease called Neurofibromatosis type 1 (NF1). He is pictured above with mother Samantha and father Andrew at their St Thomas home.

  • Bailey Fettis, 13, suffers from a rare inherited disease called Neurofibromatosis type 1 (NF1)

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He is much like a stereotypical teenage boy in any normal Exeter family - wearing his Arsenal football kit on a Saturday morning, while one of his younger brothers plays on a games console.

But Bailey Fettis is unique is one major way in that he has spent much of his life fighting a tumour on his brain caused by a rare inherited disease.

The 13-year-old suffers from Neurofibromatosis type 1 (NF1) that has led to him having six major and 9 other operations since he was a toddler.

He lives in the St Thomas area of Exeter with mother Samantha, 40, and brothers Harvey, 10, and Milo, 7, who also have the condition - as well as father Andrew, 38, and a third brother Sullivan, 4, who are unaffected.

Even though Bailey has borne the brunt of the debilitating condition, he simply accepts it as part of his life.

Samantha said: “Nothing fazes him. He never gets upset or frightened. Sometimes you would think he was just going into hospital to have a tooth out.”

Following his latest operation, the youngster was delighted JAN3 to receive a treasure box last week - containing hundreds of pounds worth of toys and games - from the Indee Rose Trust charity.

Samantha, who applied for the gift box, said: “I knew he was going to get the football kit. But when the treasure box arrived he also got six Xbox games, books, sweet and loads of other stuff. We couldn’t believe they sent it all. It’s brilliant.”

In June 2002, just before his second birthday Bailey became ill and was taken to hospital where doctors found the tumour.

Andrew said: “When you’re given the news in the hospital, the first reaction is ‘What do we do now? We’re the only people going through it.’

“Very quickly you find there are a huge number of families locally and across the country going through similar sorts of things. People don’t realise how many people are affected by brain tumours.”

According to the Indee Rose Trust, some 400 are affected by a childhood brain tumour. Like many of the associated charities, the trust was created by the family of a sufferer - Russell Dopson and Jane Allen.

Their daughter Indee Rose Dopson was just three years old when she was diagnosed with an in-operable brain tumour in January 2009 that she battled for six months.

The treasure box is designed to provide “a much needed treat and surprise” for a child whilst receiving cancer treatment.

Since the Fettis family received the news about Bailey’s condition, he has gone through several major operations - that have removed cysts and made the tumour fairly stable.

The youngster also had an eight-month course of unsuccessful chemotherapy and had a shunt and reservoir inserted for excess fluid.

Samantha said: “It has been a struggle over the years because there are always ongoing issues. We have so many hospital visits for scans and other checks.”

They are especially grateful to the doctors and nurses who have cared for Bailey over the years - sometimes for several weeks after treatment.

Andrew said: “When you’re in hospital you realise how much they put through 12 hour shifts, although it seems like they are there all the time. The children go to bed and wake-up and the same nurses are still there.”

The latest operation in Bristol came in September 2013 to treat a growth after Bailey experienced symptoms of imbalance, dizziness and flickering eyes.

Bailey is going back to school at West Exe full-time this term after managing to attend part-time during an arduous three-month recovery.

Andrew: “He likes school and was worried about having a black mark against his name over attendance. But the school have been fantastic as his primary school Bowhill were. They worked with us and planned a staged reintegration back to school.”

The treasure box is not the first charity gift Bailey has received to encourage him during his battle against the congenital condition.

Eight year ago, Bailey then aged five, was taken thanks to the Make a Wish Foundation to Newcastle United Football Club to meet his hero Alan Shearer.

Bailey was then given a fairytale eighth birthday courtesy of the Christian Lewis Trust that gave him and family a free holiday to Disneyland Paris where they enjoyed a three-day stay and were even allowed to skip the queues.

Another charity Richard's Wish in Dawlish organised a big Christmas party in 2013 for Bailey, his family and other sufferers.

His future health is far from certain, and his parents are already anticipating several further years of hospital visits.

Samantha said: “Everything could change for the better or worse. He could go five years without having anything done, or something could happen tomorrow.We just don’t know.”

A “big step” will be when Bailey nears adulthood and he has to leave the child surgeons and doctors who will have treated him for almost two decades.

In the mean-time the family are determined to continue living life as normally as possible, supporting him step-by-step on the road to recovery.

Samantha added: “You’ve just got to take each day and take each week and take each scan. And hope each scan is good.”

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