The parents of a 12-year-old girl who has been denied potentially life-saving drug treatment have spoken of their surprise at the support they have received from celebrities such as Simon Cowell and Brian May.
Abi Longfellow suffers from a one-in-a-million kidney condition called Dense Deposit Disease (DDD) that could kill her in five years.
But health bosses will not pay for the Eculizumab drug, which costs £393,000 a year, because her condition is too rare to be covered by the national funding policy, but not rare enough to qualify as an exceptional case.
In a cruel twist, the drug is actually locked in a cupboard at Leeds General Infirmary, where little Abi is treated, but doctors are banned from giving it to her.
A petition set up by her parents to get her the drugs she needs has been signed by more than 185,000 people and her plight has now attracted the backing of several stars.
Music mogul Simon Cowell appealed to his 12.1m followers on Twitter to get behind the campaign, which launched two weeks ago. He tweeted a link to the 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 mum Jo said: “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.”
She added: “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 Robin Hood, Wakefield, said that at an “eye-watering £136,000 a year,” the drug is too expensive to fund themselves.
Abi has written to Prime Minister David Cameron asking for his help, saying: “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?”
Abi’s dad Andy said: “We are not asking the NHS for a miracle but to reconsider and give our daughter the medication she needs.”
To sign the petition go to www.change.org/p/david-cameron-mp-allow-the-nhs-to-give-abi-longfellow-her-life-saving-medicine.
A spokesperson for NHS England North said: “These are incredibly difficult situations, but in this case doctors and medical experts decided that it would not be right to fund a treatment that hasn’t been proven to work for patients in these circumstances.”