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Rallying round for Lily Rose
Llily-Rose ps1203-33a Brain Tumour Lily-Rose Botham
“OVERWHELMING!” - that is how the parents of a six-year-old girl awaiting life-saving treatment in American for a rare brain tumour have described the support shown by the Driffield community.
It was just days after Christmas that Lily Rose Botham, of Star Hill Road, was diagnosed with a stage three ependymoma - a rare tumour found at the base of her skull.
“It floored us,” said Lily’s mum Tracy, who also has three other children - Emily, eight, Rosie, five, and Owen, three.
“We thought it was meningitis, or a bad virus, or maybe an inner ear infection because she started to be unsteady on her feet, but we had no idea when they sat us down in that office and told us it was a tumour, it was just the last thing we expected,” she added.
Within 48 hours of the diagnosis at Hull Royal Infirmary, Lily Rose was moved to Leeds General Hospital where surgeons spent 16 hours operating on her to remove much of the growth. And, after enduring a week in intensive care, described by Tracy as a “week of hell”, Lily Rose has been given a 70 per cent chance of survival if she successfully undergoes radiotherapy.
But if she receives the treatment in the UK Lily Rose will almost certainly be left brain damaged, including damage to her pituitary gland which will affect her growth and the complete loss of her hearing.
The alternative is to travel to Florida to undergo intensive Proton therapy which will cause hair loss but may only lead to a partial loss of hearing.
Because the treatment is not available in the UK, Government funding is available to cover travel and accommodation costs for mum Tracy and Lily Rose.
But they have been told the overall nine week stay could cost an additional £6,000 in living expenses.
With Lily Rose only having until the end of February to start treatment Tracy and dad Steve thought they would have to urgently borrow the money.
But within days they were amazed to find that family and friends had already started rallying round with £1,000 in the pot.
And now with fund raising events springing up throughout the Driffield area the family are confident they will make their target - with any excess funds going back to charity.
Steve and Tracy have paid tribute to their little girl’s bravery and determination despite her illness.
Tracy said: “She has been an absolute star. That first week we weren’t sure how she would be after she woke up, we were still unsure if we had lost part of her. But she woke up and has been cheeky ever since, she is always smiling.
“She’s got the brain tumour, she’s got to have the treatment, we don’t have an alternative, we have just got to pick it up and run with it. She’s just happy and you can’t be anything else,” she added.
And they have thanked everyone for their support, including Lily Rose’s former play school First Steps and her current classmates at Northfield Infant School who have all made her get well soon cards.
“Everyone has just donated their time and we are just overwhelmed,” Tracy said.
Steve’s employer, Simpson’s Civil Engineering, at Cranswick, have also pledged to raise enough cash to send the family on holiday once the treatment has finished.
The Star Inn, Nafferton is hosting a charity family fun day at 2.30pm this Sunday, January 29.
The event, which is being organised by Sonia Cawthorn and Lynne Kardamis, will include a party bus, balloon modelling, face painting, disco and pool tournament.
And until the end of the month Head to Toe, on Mill Street will be selling raffle tickets with a top prize of a £100 make over.
With lots more events planned for the coming weeks keep checking back with the Driffield Times & Post for updates, and if you are holding an event for Lily Rose get in touch with us at editorial@driffiedltoday.co.uk
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Monday 21 May 2012
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