ABI APPEAL

“I’m shocked I can’t have my transplant but maybe if the drug works for the other children NHS England will relent and give it to me too.

“I have to have faith. If I don’t, what else do I have?”

The boy in England, who underwent a transplant some time ago, will be prescribed the drug after his local health care trust agreed to temporarily fund it outside t he national drugfunding policy dictated by NICE – the National Institute for Health and Care Excellence.

Yet 13- year- old Abi’s family have been told their debt-ridden trust does not have enough cash to pay for her treatment.

Abi was prepared to go ahead with her transplant after NHS England refused to give the courageous teen the £136,000-a-year drug that would give her a better chance of survival after surgery.

But her consultant, Dr Eric Finlay, has told parents Jo and Andy that it’s too dangerous to go ahead because, without the medicine, there’s a chance her fragile body will reject a new kidney.

And debt- ridden Leeds Teaching Hospitals Trust cannot afford the drug. To rub salt in the wounds, NHS Scotland has funded the medicine for two patients and now a young man has become England’s first Eculizumab recipient. Astonishingly, their doctors used work compiled by Dr Finlay to argue their patients’ cases. Abi’s mum Jo said: “We feel sick to the stomach. “How can the NHS argue against giving this to Abi when other patients are getting it? “The boy’s local trust may be funding it but it just exposes a postcode lottery of care and the hypocrisy of our health service. “We are really pleased that this child will get what he needs and would never hold it against the family involved, but it raises serious question about the state of our NHS.” Abi must now go on a more aggressive form of kidney dialysis to keep her alive – a treatment which has previously rendered her unconscious. Jo, 45, of Wakefield, West Yorks, warned: “The little soul is going to be scared stiff as she’s had it before and it made her very, very ill. At one point she lost consciousness and that is a lot to overcome as an adult, let alone a child. It’s so unfair.

“Abi was fully aware of the implications of having the operation without the drug and is so anxious to live a normal teenage life it was a chance she was willing to take.

“But Mr Finlay says its too risky knowing that there’s a likelihood it will fail and will put her at higher risk if she has to undergo a second transplant.

“We don’t blame him and he was just as sickened as us, but where do we go from here? How can NHS England make a choice to put the life of a little girl in danger? I don’t know how these people sleep at night.”

Abi has the rare kidney condition Dense Deposit Disease which could kill her before adulthood without transplant.

Rare

Jo, husband Andy, also 45, and Abi’s older sister Jess, 17, may eventually uproot to Scotland to get vital Eculizumab.

The drug has not been approved north of the border either but health bosses have agreed to help two patients with the