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."
More top news
Hundreds of council workers have gathered in sports centres and town halls across the region to count the votes in the 2016 local elections.
The votes are being counted in 22 councils across the Anglia region in the biggest test of political opinion since the General Election.
Clear skies overnight but remaining frost-free. Another sunny day tomorrow and increasingly warm as we head towards the weekend.