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Tillie's hope for American treatment for rare tumour

By Gloucestershire Echo  |  Posted: September 17, 2013

tillie

Tillie with Nicola Drake, mum Sophie's cousin, mum Sophie (21) and Louise Carter, Sophie's sister

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A YOUNG mum is to find out this week whether her little girl will have to travel thousands of miles to get life-saving treatment to shrink a rare brain tumour.

When Sophie Clark discovered her five-year-old daughter Tillie was seriously ill, her world fell apart.

“I thought, ‘Why my little girl? Why not me?’” said Sophie. “I just cried.”

Sophie, 21, from St Peter’s, took Tillie to the doctor after she started suffering with headaches and vomiting.

A CT scan at Frenchay Hospital in Bristol revealed Tillie had craniopharyngioma – a rare tumour which is lodged in the tissues of the pituitary gland.

Sophie added: “She’s a perfect child – a really girlie girl. She loves painting her nails and makeup.

“She asked me the other day, ‘I’ve got a brain tumour, haven’t I mummy?’”

Tillie had an operation at the end of August to put a stent in to drain fluid from around the tumour, when surgeons managed to remove some of the growth.

An MRI scan was taken yesterday to determine whether the gruelling eight-week treatment programme, only available in Florida, is the best option for her.

Sophie said the family was carrying on life as normally as possible until then.

They are 90 per cent certain she will need proton radiotherapy, which is only available in the USA. If she does, it will mean an eight-week stay for Tillie, Sophie and dad Charlie. The NHS will fund their trip and accommodation, but the family will be expected to find their own living expenses, which leaves the unemployed parents facing a major financial hurdle.

Sophie said: “I know it’s going to be a long process. It’s a rare tumour that she’s got and it’s so close to the hormone receptors in the brain. She could lose her eyesight.

Sophie’s cousin, Nicola Drake and Tillie’s aunt, Louise Carter, have organised a fundraising day at Swindon Village Hall on October 13, from 1pm to 5pm, to help fund Tillie’s parents throughout their stay and allow them to focus on getting their daughter well.

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