Newcastle mam calls on health bosses to back Battens drug
Gail Rich says it's "heartbreaking" treatment for her two daughters, who suffer from the fatal disease, isn't available on the NHS
A Newcastle mam - whose daughters both suffer from a fatal disease - says it's time that health bosses back a drug that helps reduce the impact of the condition.
Gail Rich's two daughters, Nicole and Jessica, both suffer from Battens disease - a condition that can affect a child's ability to talk, walk and eat and drink.
Nicole and Jessica have been benefiting from treatment, that has led to massive improvements in their condition. However, the treatment is not currently available on the NHS and NICE - the body that decides what drugs should be funded by the NHS in England - is currently debating as to whether or not it should be funded.
Gail's told us it would be heartbreaking for all the families in the Battens community if it wasn't made available:
"We are full of hope - we are confident, how can they say no?
"The treatment works, they've got evidence it works - the fact that it's been given its license prove that it works.
"We are ready to wait for that decision - as much as we would like the decision sooner - we will wait as long as it takes and we will do whatever it takes to make this treatment available for our children, for children to come and the children right now.
"If a child is diagnosed tomorrow, they would not have this treatment that Nicole and Jessica are having right now and that is just heartbreaking."
You can find out more about Nicole and Jessica, and Battens disease, here.