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."
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Any remaining outbreaks of rain will ease away to leave some sunny spells but scattered showers are likely to return later. Highs 19 deg C.
A charity shop in Framlingham Suffolk has been inundated with Ed Sheeran fans today keen to grab an item of his clothing.
This evening will start mainly dry but cloud will then thicken as outbreaks of rain spread east later in the night. Lows of 12 deg C