'OUR CHILDREN DESERVE TO LIVE AS MUCH AS ANYONE'

THE parents of two seriously ill children are waiting in agony to see if funds for the care that keeps them alive will be cut off.

- By Julia Etherington

Ollie and Amelia Carroll are among 36 in the UK with life-limiting Batten disease. Their drugs cost £520,000 a year each and if the NHS cannot get them cheaper, the therapy may stop.

Mum Lucy begged: "How can you say that one child's life is worth more than another?" Lucy, 39, continued: "It's hard because you're being asked questions about your child's quality of life, and you're having to prove that your child has a right to live." NHS England must decide by May whether to keep funding the enzyme therapy drug Brineura, which can slow the progress of the neurodegenerative disorder.

Batten's also known as CLN2 causes seizures and dementia plus it robs children of their sight, mobility and the ability to talk and swallow. A patient's average lifespan is between six and 12 years.

Ollie, now 14, hit the headlines in 2016 when he mustered his strength to stand and hug Prince Harry at the WellChild Awards.

Months later Harry paid a surprise visit to Ollie and Amelia, now 11, in Great Ormond Street Hospital.

Their fortnightly brain infusions of Brineura have been slowing the effects of Batten's - but now the Carrolls, whose plight has been repeatedly publicised by the Daily Express, fear that they will be forced to watch the siblings succumb to a painful death.

Parents Lucy and builder Mike, 40, are fighting to prove to health chiefs that their children's lives are worth saving.

Lucy said: "With Ollie, they are asking a lot of questions about children in wheelchairs who can't walk and can't talk, and want to know what they are still able to do.