Ugandan Girl, 8, with face tumour the size of a football to have pioneering surgery

By IndepthAfrica
In East Africa
Dec 14th, 2012
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An eight-year-old girl with a football-sized facial tumour is to have pioneering surgery before it strangles her.

The rare growth first appeared when Trinny Amuhirwe was four-and-a-half, and she twice underwent surgery in her home country of Uganda to remove it.

However, each time the bone tumour has grown back more quickly and it now weighs 4.4lbs.

 

Trinny Amuhirwe aged 3 months in Uganda
Trinny Amuhirwe after her second operation in September 2011

Trinny (aged three months left) has had two operations to tackle her facial tumour. She is pictured (right) after her second operation in September 2011 in Uganda

Since then Trinny has lost sight in one eye due to the swelling and her teeth are being pushed out of place.

 

THE RARE DISORDER THAT REPLACES BONE WITH SCAR TISSUE

Fibrous dysplasia is a rare bone disease that destroys and replaces normal bone with fibrous (scar-like) tissue.

As the bone grows, the softer, fibrous tissue expands, weakening the bone and making it more prone to fractures.

One or more bones can be affected and it can vary in severity.

Mild cases usually cause no signs or symptoms and develops during the teens.

More-serious cases of fibrous dysplasia may result in bone pain and deformity and are more common in under-10s.

There is no cure for fibrous dysplasia. Treatment focuses on treating signs and symptoms.

The bone lesions may stop when the child reaches puberty.

NIH/Mayo Clinic

Now she will undergo a pioneering surgery at the Cromwell Hospital in London. British experts will attempt to remove all of the benign tumour using the latest technology before reconstructing her face.

The 15-hour operation was made possible by UK charity Facing the World, who flew Trinny and her mother Sarah, 30, from Uganda to the UK for treatment.

Graham Banton, director of Facing the World, said: ‘This is a massive operation undertaken by some of the best surgeons in the world.

‘We hope to be able to remove all the infected bone tissue which will save Trinny’s life and give her back her sight.

‘Using advanced diagnostic and mapping techniques our doctors were able to pinpoint precisely the size and depth of the tumour.

‘Without treatment there would be no hope for Trinny, but thanks to the generosity of our patrons and the expertise of our surgeons, she has a chance.’

Trinny has Fibrous dysplasia – a bone disease that destroys and replaces normal bone with fibrous bone tissue.

Mrs Amuhirwe says over the years she has watched her daughter’s face become almost unrecognisible.

Trinny stands outside Buckingham Palace in London. She flew to London with her mother for surgery thanks to the charity Facing the WorldTrinny stands outside Buckingham Palace in London. She flew to London with her mother for surgery thanks to the charity Facing the World

 Trinny Amuhirwe and Sarah Trinny Amuhirwe and Sarah

The mother-of-three said: ‘In the beginning it was like a small piece of bone sticking out of her face.

‘I thought it would eventually disappear – but it continued to grow. After the first operation the tumour grew back in just two months.

‘Since then it’s taken over her face. I can’t bear to see her like this but she’s been so brave about it.’

Following surgery the schoolgirl will be sedated and moved into intensive care – estimated to cost around £65,000.

All surgeons involved are giving their time free of charge and Facing the World are paying for all of Trinny and Sarah’s living cost – but are entirely dependent on public donations.

Each year Facing the World help up to eight children with extreme facial disfigurements from all over the world. 

The charity was founded in 2002 by two craniofacial surgeons Martin Kelly and Norman Waterhouse after Mr Kelly met a young girl in need while volunteering in Afghanistan.

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