A woman whose jaw disintegrated due to a rare bone disease has revealed doctors managed to save her smile – by implanting her toe into her face.
Hayley Dix, from High Wycombe, Buckinghamshire, was diagnosed with Gorham’s disease – a skeletal disease that causes bones to erode – when she was 11 years old.
Her jaw had crumbled so much it had snapped in half, leaving her severely disfigured. Cruel bullies told her she looked like she had been run over by a tractor.
But she’s learned to smile again after undergoing a pioneering operation to have her second largest toe amputated to rebuild her jaw.
Hayley has now regained her confidence thanks to the procedure and has found love.Full-time mother Hayley, 30, said: ‘The disease began in my mouth, then it went across my skull, at one point it was so close spine that it was life threatening.
‘Cruel bullies used to tell me I looked like I’d been run over by a tractor.
‘After having chemotherapy and calcitonin injections, my jaw had become so thin that it actually broke.
‘I was in agonising pain, my bones were wasting away.
‘My confidence was at rock bottom, and doctors told me they could help rebuild my face – but they’d have to amputate my toe to do it, to make a jaw hinge.
‘I didn’t have a childhood, my teenage years were spent in hospital.’
Following the surgery, Hayley says she’s never felt happier and is planning to get married.’After my surgery, I started to regain my confidence and that’s when I met my now fiancé, Aaron.
‘He didn’t judge me for illness and we are finally having our dream wedding in five months’ time.’
‘There is still a chance the disease could come back. Because it is so rare, no one knows what the future holds.’
Hayley’s childhood was spent in and out of hospital and says that her differences made her a target for bullies.
She added: ‘In primary school there was a group of girls who would laugh at me and throw pencils and rubbers at me.
‘A boy in secondary school asked me if my face had been hit by a truck.
‘The horrible comments I used to get when I was younger really stung.
‘My school once held an assembly when I was in hospital one day. The head teacher told the whole school that I wasn’t well and explained my illness to the kids.
‘When I got back I think people understood why I looked the way I did a bit more.’
Gorham’s disease – which is also known as the bone vanishing disease – has affected all aspects of Hayley’s life but she’s determined not to let it ruin her future.
Hayley said: ‘I’ve had my nerves and arteries taken from my legs.
‘I’ve had my toe amputated and also a metal plate put into my face to keep my new jaw bone in place.
‘I was told that if my condition had spread to my spine that I could have died.
‘Thankfully after treatment, my bones stopped eroding across my face and since the age of 21 I haven’t needed further amputations or surgeries.
‘It is inactive at the moment but there is still a chance it could come back before it’s so rare, no one knows what the future holds.
‘But thanks to my supportive family and Aaron, I am able to now accept myself.’
Hayley fell pregnant four years ago with son, Ruben, and due to her facial disfigurement found school parties and meeting other parents difficult.
She said: ‘Now that my boy is older, when I go to birthday parties, his friends do stare at me. I still find that hard.
‘Because he is such a sociable little boy, he will go play with other kids and the kids will ask what is wrong with my face.
‘Most of the time they aren’t doing it to be nasty. They are doing it because they are intrigued. I know I look different.’
The disease is so rare that there has been fewer than 300 cases reported in medical history.
Lisa Klepper, director of Patient Programs from Lymphangiomatosis & Gorham’s Disease Alliance said: ‘GSD most commonly affects the bones of the skull, jaw, spine, ribs, and pelvis.
‘People with the disease also may have lymphatic malformations in other parts of the body, including the lungs, this results in the collection of a fat-rich fluid called chyle in the thorax and abdomen.
‘For reasons not understood, some patients’ bone loss ceases spontaneously and may remain dormant for many years.’Gorman’s disease is a rare bone disorder characterised by progressive bone loss (osteolysis) and the overgrowth (proliferation) of lymphatic vessels.
The condition has been referred to as disappearing bone disease, vanishing bone disease, and massive osteolysis.
A hallmark of the disease is the lack of bone healing following fracture.Affected individuals experience progressive destruction and resorption of bone.Multiple bones may become involved. Areas commonly affected by the disease include the ribs, spine, pelvis, skull, collarbone (clavicle) and jaw.
When the disease affects the maxillofacial area, pain, loose teeth, fractures and facial deformity may develop.
The exact cause of Gorham’s is unknown. No environmental, immunological or genetic risk factors have been identified. Most cases occur randomly for no known reason.
The first known case of the condition was in 1838 when it was reported in a medical journal.
Source: National Organization for Rare Disorders
Fiancé Aaron Stiff and Hayley’s six-year-old son Ruben are happy to see Hayley smile again b-error
A metal plate has been put in the side of Hayley’s jaw to stop her face from sinking inwards b-error
The 30-year-old was diagnosed with the painful condition aged 11 and was taunted by bullies
Hayley was a happy, confident child before she developed the rare bone disease and was bullied at school for her facial deformity
Hayley has gained so much more confidence following the operation
Gorham’s disease can remain dormant for years and cause further problems in the future but the couple are staying positive
Hayley is looking forward to marrying her fiancé Aaron in five months