Thursday 27 October 2016

Parents' joy at Cowell support

Published 08/06/2015 | 10:26

Music mogul Simon Cowell tweeted a link to the petition
Music mogul Simon Cowell tweeted a link to the petition

The parents of a 12-year-old girl who is unable to get the life-saving drugs she needs because her condition is so rare have said they are astonished by the support they have received from the public and celebrities like Simon Cowell.

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Abi Longfellow's family are campaigning for the Government to put the treatment she needs on the NHS after being told the dense deposit disease she has is too rare to justify the cost of the drug.

Music mogul Cowell tweeted a link to the family's petition and wrote: "Let's help save this wonderful girl. Abi deserves all the help we can give her. Save Abi."

Speaking on ITV's Good Morning Britain, Abi's father Andy Longfellow said: "The help that the nation has given us is just fantastic, the support, the messages, it's phenomenal to be honest with you."

Her mother, Jo Longfellow, said: "We've been astonished how many old friends of ours, old school friends and colleagues have got in touch but when you start hearing that people with such a big profile as Simon Cowell and Brian May have tweeted, it's absolutely astonishing it really is."

Mrs Longfellow said: "I think what excited us when we heard that Simon Cowell had tweeted was that he has so much publicity and so many people following him that it would just raise the profile of Abi's cause."

The family, from Wakefield, West Yorkshire, said that at an "eye-watering £136,000 a year", the drug Eculizumab - which they have called on the manufacturer Alexion to bring down in price - is too expensive to fund themselves.

An internet petition now has more than 185,000 signatures and Abi herself has written to Prime Minister David Cameron to ask for his help.

She said to the PM: "I'm a 12-year old English girl and if I lived in Ireland, Europe, America, Canada etc I would get the medicine without hesitation.

"So I want to know why am I being disadvantaged in my own country?"

Writing on the petition website, the family said: "Our daughter, twelve-year-old Abi, has a rare kidney disease that could kill her in five years.

"Under lock and key in the hospital where she is treated is the medicine that could save her life.

"But thanks to a cruel loophole, doctors are forbidden from giving it to our daughter."

They said: "Knowing that the drug sits in the hospital but Abi can't have it is horrendous.

"In a couple of years' time it will be as cheap as a packet of paracetamol but it will be too late for Abi. We know the drug is there that could help Abi and it is used in other countries. It's torture to know that her life could be saved but we can't afford to save it. We're calling on Alexion and the UK Government to give Abi's life a chance."

Press Association

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