At first glance, it isn’t apparent that Sheffield schoolgirl Lauren Wright has any health problems.
But the 12-year-old is currently living with a benign brain tumour brought on by a genetic condition which is still lacking any form of specific treatment.
Now her dad, Tim Wright, has vowed to raise money and awareness to help research into his daughter’s illness, neurofibromatosis Type 1, which causes tumours to develop along various types of nerve endings.
“You look at Lauren and you wouldn’t be able to tell there was anything wrong with her if you didn’t know,” said Tim, aged 40, who lives in Malin Bridge.
“She is the friendliest and happiest girl you could ever wish to meet. She loves school even though she struggles academically.
“She loves drama and we were so proud that she won an achievement award last year.”
Lauren’s tumour was discovered after she displayed several of the features associated with neurofibromatosis Type 1, including coffee-coloured patches on her skin, lumps on her skin, learning difficulties and high blood pressure.
Doctors are waiting for the tumour to grow to a size it can be removed more easily, most likely within the next couple of years.
Patients with NF1 are born with the condition, although some symptoms develop gradually, and the severity of the disorder can vary considerably from person to person.
In most cases the skin is affected, causing the coffee-coloured patches – known as café au lait spots – and soft, non-cancerous bumps called neurofibromas.
About one in three people with NF1 also develop a range of further health problems, which can include scoliosis – a curved spine – and behavioural problems.
One in 3,000 people are sufferers, but, as yet, there is no direct medical treatment or gene therapy to cure, prevent or reverse the features of the condition.
Lauren’s mother, Michelle Oldfield, who lives in Stannington, also has a mild form. Each child of an affected parent has a 50 per cent chance of inheriting the gene and developing NF.
Tim said his daughter, a Forge Valley School student, has been in and out of hospital almost all her life, even though her case is still classed as less severe.
“In March, following an MRI scan to examine neurofibromas on Lauren’s eyelid, it was identified that she also has a low grade glioma, or benign tumour, on her brain,” said the decorator and marketing professional.
“Further MRI scans have revealed that the tumour is growing, and surgery will be required to remove the glioma.
“Having previously spoken to friends and relatives about this condition, it is clear that there is very little awareness of neurofibromatosis.
“Because so little is known about the condition, I wanted to focus on it and make people more aware.”
So far Tim has completed the Great North Run in just over two hours and 21 minutes, generating £775 for the Neuro Foundation charity.
He said this was a huge challenge, considering he is not a natural runner.
“I’m the most unfit bloke you’ll ever meet,” he added.
“But I believe that the pain and suffering I experienced was a mere tiny fraction of the challenges faced by people with NF.”
Previously he had collected £340 by giving up alcohol for a month.
Now other fundraisers are being considered, such as the London Marathon, a skydive or treks abroad, all while Lauren makes every effort to live as normal a life as possible.
“We’re so proud of her,” said Tim.
Visit www.justgiving.com/timmybanana to donate.
Genetic mutation causes disorder
Neurofibromatosis is the name for a number of genetic conditions that cause tumours to grow along nerves in the body – in NF, the growths are usually non-cancerous, or benign.
There are two main kinds of neurofibromatosis – type 1, the most common variety, affects about one in 3,000 births, while type 2 is less common, affecting about one in 35,000 births.
Despite sharing the same name, these are separate conditions with different symptoms and caused by changes in different genes.
NF1 is caused by a genetic mutation. This is where instructions carried in cells become scrambled. As a result, the growth of nerve tissue is not controlled properly.
In half of all cases of NF1, the genetic mutation is passed from a parent to their child. In other cases, the genetic mutation appears to develop on its own, which is known as a sporadic mutation.
There is currently no cure – instead, people with the condition are regularly monitored for further problems and treated if and when these develop.