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A two year old girl from Chelmsford faces a "lifetime on dialysis" because the NHS won't fund the drug she needs to treat an extremely rare blood condition.
The family of Indie Smith are faced with a bill of a £250,000 a year to keep their daughter on the drug called Eculizumab.
It is currently being paid for as part of a clinical trial. That funding runs out later this year, but it's not yet available on the NHS.
In a statement today the Department of Health said: "We need to make sure NHS resources are being used wisely. That's why we have asked the NationaI Institute for Health and Clinical Excellence to further explore Eculizumab's suitability for national commissioning."
Latest ITV News reports
The parents of a 2-year-old girl from Essex with a rare blood disorder are campaigning for her treatment to be made available on the NHS.