On Air Now
Ellie Taylor & Anna Whitehouse 10pm - 1am
27 July 2016, 15:42
A couple whose three children all have an incurable genetic illness have told Heart they live in hope that a pioneering new treatment has worked.
Leah and Shaun Scott's identical twin boys had a one-in-four chance of developing metachromatic leukodystrophy known as MLD, which has already left their older sister Paige unable to walk and talk.
Earlier this year the twin boys took part in a pioneering trial in Italy.
Consultants at Great Ormond Street recommended they take part in the gene therapy trials and although it's in it's early stages it appears to successful in treating children with MLD before symptoms start to show.
It's too late for Paige to try the treatment but this was the only chance the couple from Snetterton had of saving the twins.
Mum Leah told Heart;
‘We had no idea that Paige had this condition when we conceived the twins and only found out when I was about to give birth.’
'If we had a crystal ball we still would have done it as we had no other option - it's either this or let them go down the same path as Paige.'
Dad Shaun said;
'You've just got to keep going on and take it day by day and do as much as you can with the children.'
A fundraising page has been set up to support the families fight against the disease.
You can also follow their journey on Facebook;