15260/1GAZETTE & HERALD: SCHOOLGIRL Ellie Brown has undergone the first stage of a life-changing procedure this week, which her parents hope will remove part of a huge birthmark on her face.
Six-year-old Ellie, of Severn Close, Calne, was born with the rare birthmark, known as a congenital melanocytic naevi , covering her right cheek and side of her nose. The condition also causes hair growth on the birthmark.
On Monday Ellie, a pupil at Fynamore Primary School, went into the Cromwell Hospital in London for the initial step in a tissue expansion operation.
Doctors inserted two balloons under the skin on her forehead and right cheek, which will be inflated over the next 12 weeks to stretch the skin.
It is then hoped the birthmark can be cut away and the excess skin stitched back across her face.
Her parents, Paul and Sam, said she got very distressed by people staring at her and making rude comments.
"We call it her 'fluffy' because of the hair growth but it really does upset her," said Mrs Brown. "She's very aware of it. It's emotional for the whole family."
Ellie, who has a four-year-old sister Lauren, has already had five unsuccessful operations on the NHS.
After years of fighting, her parents decided to pay £35,000 for a specialist CMN surgeon to treat their daughter.
"We are re-mortgaging our house and trying to raise money wherever possible," said Mrs Brown.
"Paul ran the Bristol half marathon in September and raised £2,000, and three friends are running the Bath half marathon in March."
Last week they heard that NHS officials decided not to contribute towards the cost of the operation, despite pleas from the family.
"I'm so angry they've denied a six-year-old girl the chance to look like her friends," said Mrs Brown.
"Ellie's been through so much already. We wanted Dr Bryan Mayou to do the operation because he was the first doctor to introduce tissue expansions in CMN. He's definitely the man for the job we've seen evidence of his work.
"The NHS doctors were cleft palate specialists. We wanted someone who knew what he was doing with CMN."
Mr Brown added: "It's a matter of principals.
"We really feel we need the specialist support for such a rare case."
The family held an open house party on Saturday for family and friends to wish Ellie good luck.
She will be in hospital for three days but will need at least four more operations, including reconstructive facial surgery and a skin graft on her upper lip. Instead of travelling to London twice a week for injections to inflate the balloons, Mrs Brown will learn how to do them herself.
"She has tubes under her skull leading to the balloons which I will have to inject," said Mrs Brown.
"Ellie took pictures into school to show her friends what she would look like when the balloons were pumped up. She will have home schooling and might not go back to school until September. But we are hoping by this time next year it will all be done.
"We just want people to be aware of what Ellie's been through and who she is, and we don't want anybody else to be in the same situation as us."
The family are grateful for support from the Birthmark Support Group, amongst other organisations.
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