Life

By Charlotte Nisbet 


An adorable eight year old whose body is attacking her face has undergone £115K worth of operations to avoid it disappearing.

Lucy, from Moota Bay, South Australia, was first diagnosed with Parry Romberg syndrome –  a rare disease whereby the immune system causes the tissues beneath the skin to shrink – at eight months old.

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Her devastated parents, Jodie Hancocks, 47, and Nick, 37, were told there was nothing doctors could do to save their daughter.

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But they refused to give up on Lucy and managed to find a doctor oversees who was willing to help.

The couple raised £115k in just a few months and despite a few setbacks, Lucy has managed to avoid losing half of her face.

Surgeons used pioneering techniques to transfer tissue from her back to help rebuild her shrinking features.

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Jodie, a full time mum, said: “I knew something was wrong the minute Lucy was born, the left side of her face looked smaller than the right.

“After researching Parry Romberg syndrome, I was left devastated by reading what the future held for Lucy.

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“Doctors had told us there was nothing they could do to stop the degenerative disease but we refused to give up.

“We managed to raise £115k (200k Aus Dollars) so Lucy could have three operations in the US.

“This helped rebuilt her face and halt the vicious disease which also causes lesions on the left side of her brain.

“To prevent these from getting worse she has been on steroids for the swelling but this has left her disfigured as her face has drooped.

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“Lucy is so brave though, she isn’t fazed by surgery, we don’t treat her any different to our other children.”

Lucy’s condition isn’t easy to disguise as it’s on her face and she is often subjected to cruel taunts by strangers in the street.

Jodie added: “We’ve had people staring and pointing and then questions such as ‘what’s happened to her face?’

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“Lucy gets embarrassed and just stands behind me as I explain her rare condition.

“Thankfully she’s a tough kid and will say ‘I’m going to look so good after surgery,’ when we discuss her future operations.”

Parry Romberg syndrome has tried to ravage Lucy’s face from the day she was born but thanks to surgery, Jodie and Nick have managed to gain back some control.

Jodie said: “The whole left side of Lucy’s face has been replaced, which is known as a microvascular free tissue transfer and she’s also had a frontal lobe replacement – something that helped rebuild the front of her skull.

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“The third surgery was a frontal galeal flap to the forehead, whereby tissue was taken from the top of the head.

“We have been to the same surgeon for all of her surgeries and we have put all our trust in him.

“She has been through so much for one little girl but despite it all she never fails to smile and be happy.

“I hope our story helps any other families going through something similar as without the fundraising and searching for alternative treatments, Lucy’s quality of life would be completely different.”

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Dr Anjali Mahto, Consultant Dermatologist and British Skin Foundation spokesperson, said: “Parry Romberg syndrome is a rare, autoimmune condition affecting one side of the face in which there is a loss of tissue such as fat, muscle and bone beneath the skin.

“It can be difficult to treat and often requires the use of drugs which suppress the immune system.”