Parents of siblings with Batten Disease take legal action over potentially life-saving treatment
The parents of two siblings from Cheshire are taking legal action against a decision not to recommend the funding of potentially life-saving treatment.
Amelia and Oliver Carroll, aged six and eight, both have a fatal neurodegenerative condition known as Batten disease.
They currently receive a specialist drug on compassionate grounds from the pharmaceutical company that developed it.
The treatment has proven to be extremely effective for both Oliver and Amelia, with it appearing to halt the degenerative effect of the disease in both of them.
Without the treatment life expectancy for individuals with Batten disease is around six to 13 years. With the treatment, it is estimated that individuals could live for 60 years.
Lawyers for their parents have applied for a judicial review of Nice's decision, on the basis that it is unlawful on several grounds and also amounts to a breach of key human rights legislation.
The children's mother Lucy Carroll says it has been heartbreaking to see what the children have faced and they have shown such courage through their lives.
Follow our coverage with the Carroll family's bid for specialist treatment here:
Prince Harry making special memories with Oliver in hospital
Parents appeal decision to deny specialist funding for their parents
For more information of the family's charity Ollie's Army Initiative click here.