Parents launch £250,000 battle against illness

THE parents of children with a terminal illness are trying to raise a £250,000 to set up a clinical trial for all youngsters with the condition.

Ollie and Amelia Carroll, nine and seven, from Poynton, have CNL2 Batten Disease, which typically gives a life expectancy of no more than 12-years-old.

In the meantime the condition causes their speech, mobility and eyesight to deteriorate.

Parents Lucy and Mike Carroll have been given the chance to help medics at Great Ormond Street Hospital set up a clinical trial to look at preventing sight loss caused by Batten Disease. But to turn this into reality a huge £250,000 must be raised and a justgiving website has been set up to help achieve this.

The siblings are given a brain infusion treatment that replaces enzymes and both have responded well.

As she was younger when she started receiving it Amelia has received more benefit and can walk and talk, attend school and still has her sight.

Lucy, 33, said: “This disease robs children of their abilities until ultimately taking their life.

”Our children are thankfully now on treatment which is proven to slow down the progression of the disease however heartbreakingly this treatment will not stop the loss of sight.

“Sadly Ollie has already lost his sight but we are now in a race against time to save Amelia’s. The trial is aimed to help as many children with CNL2 Batten Disease as we can.”

Lucy and Mike also have two other sons, Danny and Micky, 13 and 12. Among those to help get the money rolling in is extreme fundraiser Carl Thomas, from Stockport. He has already taken on other epic challenges - including 10 marathons in 10 days - and this time he will attempt to complete a marathon within 24 hours - while pulling an aeroplane.

The attempt takes place at Elvington Airfield, in York, on September 16.

Anyone who wishes to donate to the cause can visit www.justgiving.com/ crowdfunding/carlthomas?utm_ term=ZJw8RJk3N.