I was told I might die: Brave girl, 18, describes rare condition that causes tumours to grow on her body
Katie's mother suffers from a mild form of the same condition
When Katie Newell was 15 months old she was diagnosed with a rare condition that caused painful tumours to grow on the upper half of her body.
She was left unable to feed properly and her parents were told she was unlikely to survive past the age of five.
Katie Newell with her mother Vanessa. She suffers from tumours that are difficult to remove as they have such a rich blood supply
But the brave youngster battled through and after having several operations in the U.S, she has just celebrated her 18th birthday.
Speaking on ITV's This Morning, the teenager from Chelmsford, revealed she had a difficult childhood as her severe case of neurofibromatosis had left her with disfiguring growths.
'It was hard for me as children would whisper about me in the street', she said.
'The growths nearest my lungs affect me the most as I find walking or going up stairs difficult. I get tired.
'Sometimes my condition scares me, like when I was 14 I was told I could die from an operation to remove a growth.'
Future plans: Katie hopes to one day become an author
Katie has neurofibromatosis – a genetic condition that causes multiple tumours which affect the nervous system. They are usually non-cancerous but can compress organs such as the lungs and cause facial weakness and deafness.
It was reported on This Morning that
scientists have recently speculated that Joseph Merrick, also known as
the Elephant Man, suffered from this condition along with proteus
The growths include blood vessels and nerve endings and so are only tackled when they become life-threatening. Sometimes they grow back even once they've been removed.
Her mother Vanessa, who suffers from a very mild form of the same disease, said: 'Once she got past five I decided we had to do something, rather than waiting for her to die.
'So we raised money and went to America for surgery, because they tell you the risks of dying but also give you the choice.
'Luckily Katie is very stubborn.'
Katie attended Chelmsford New Model Special School but found it tricky going on to an open college. However, not all youngsters with the condition attend special needs schools.
'I felt more left out, as I'm different' she said.
'Katie realised she needed more help than other kids her age. They would be going to the shops, while she would be waiting for a taxi to take her home. She found it quite upsetting,' her mother added.
However, Katie, who has received two child of courage awards, is determined to continue with her studies and wants to become an author.
'Katie always says “I have neurofibromatosis but neurobiromatosis doesn't have me”,' her mother said.
NF is caused by a mutation in one of the genes. About half of the people who have NF have no family history of the condition. This is called a spontaneous gene mutation. The other half of people will have inherited NF from their mother or father.
It varies from one person to another even in the same family. Some people will be mildly affected with very few health problems. Others will have some serious health problems that mean that daily life is difficult and it restricts what they can do.
Richard Taylor, chairman of the Neuro Foundation said: 'I would like to emphasise that NF1 is not the same disease as Proteus Syndrome which Joseph Merrick suffered from.
'NF1 is a debilitating genetic illness that causes benign tumours to grow in 25,000 patients in the UK.
'The condition often leads to social isolation as many people simply do not understand or appreciate the condition.
'Patients like Katie Newell offer hope and inspiration to thousands of patients with NF1 as she demonstrates how possible it is to lead a near normal life with the right type of support.'
For more information about neurofibromatosis please visit http://www.nfauk.org/