Carol and Ranti Nwosu have been left devastated after the National Health Service (NHS) refused to pay for the drug Exjade despite it transforming their son Daniel's condition.
|Carol and Ranti Nwosu with their three children, from left: Mark, Daniel and Ruth
Daniel, 10, began living a normal life after undergoing a year-long trial of the drug.
But while Exjade is available in Scotland, the NHS in England and Wales have decided not to foot the £10,000 - £15,000 bill for a year's supply of the tablets to a young sufferer.
Carol Nwosu, from Peckham, has now launched an online petition on Downing Street's website calling on prime minister Gordon Brown to fund the drug for children who would otherwise rely on painful stomach injections.
Sign the petition by clicking here or see the link at the bottom of this article.
Little Daniel, who suffers from Sickle Cell anaemia, could die unless he has a blood transfusion every two weeks.
|Flat normal blood cells and a 'sickle' shaped cell
He was one of 100 children who took part in the Exjade trial which brought hope of a normal life.
But that hope was dashed after the NHS ruled that Primary Care Trusts (PCT), not the government, would have to fund the on-going treatment.
Many PCTs are cash-strapped and the outlook is very few PCTs will offer the drug and only a handful will benefit in a post-code lottery.
Dr Farrukh Shah, a consultant haematologist at the Whittington hospital in London, said only one of her 20 child patients who could benefit from Exjade is getting it paid by their PCT.
She said: 'All patients should get it without arguments about who's going to fund it. They are being made victims of NHS internal politics. It's all down to the people passing the buck financially between hospitals and PCT's.'
Carol Nwosu now faces having to tell her son that he has to go back to painful and exhausting twice-weekly transfusions.
She said: 'To give a child a taste of how good it can be and then make them go back to the old system, it is punishment, it is cruel, and it is abuse.'
During the trial, Daniel went from having a needle fed into his stomach for 10 hours a night, five days a week, to taking two tablets each morning dissolved in water or orange juice.
He can now, for the first time, spend nights at his friends' houses, travel easily with his family and sleep comfortably.
But doctors have warned that next month his tablets could end because Southwark PCT do not have the funds to continue. Another 13 children in the area could also suffer the same fate.
Daniel's parents discovered their son was suffering from Sickle Cell at six when he suffered two or three mini-strokes a week and had frightening hallucinations.
Daniel also has a neurological condition called Moyamoya, where tiny blood vessels form in the brain to bypass blockages. Last year this caused him to suffer a haemorrhage.
The drugs company, Novartis, has agreed to extend the Exjade trial for six months but after that the future looks bleak for Daniel and thousands of children like him.
Carol, who gave up her career running an employment agency to care for her son runs the charity Sickle Cell and Young Stroke Survivors (www.scyss.org).
She is appealing for people to sign the Downing Street petition.
Please visit: http://petitions.pm.gov.uk/1LessNeedle/