Newbold girl WILL receive life saving treatment after family's campaign

The mother of a four year old Newbold girl says she's 'over the moon' after treatment was approved to extend her life by decades.

4-year-old Grace Thompson suffers from Batten disease which is a degenerative brain condition 

Peak FM has been backing her family's campaign to get the drug Brineura approved for use on the NHS.

After months of lobbying approval group NICE, the drug will now be available, subject to Grace undergoing assessments to prove she is eligible.

Her mum, Izabela told Peak FM: "I couldn't believe it when I heard the news. I was crying and I just couldn't control myself. This just changes everything. 

"We know we will still have to wait for her to access the treatment because it's not that straight-forward but it's waiting for something amazing to happen."

Chesterfield MP Toby Perkins has taken Grace's case to parliament to raise awareness of her condition.

He told Peak FM: "I'm absolutely thrilled. I think it's tragic they've had to go through this ordeal on top of the ordeal of Grace's condition but nonetheless it is fantastic that we've got this verdict and now finally Izabela and the family can concentrate on Grace receiving the treatment she needs."

Meindert Boysen, director of the Centre for Health Technology Evaluation at NICE, said: “This treatment shows great promise in slowing the progression of this devastating condition to allow children to enjoy normal childhood activities for longer which is so important.

“We are pleased to be able to make this early announcement, realising that families have been anxiously waiting for news, while we are carefully working through the details necessary to finalise the managed access agreement.”

Health Secretary Matt Hancock said: “I’m absolutely delighted this new treatment will be funded by the NHS, giving families dealing with the devastating impact of Batten disease renewed hope for a better quality of life for their child.

“Through our Long Term Plan, we want all patients to have access to the most pioneering, value for money medicines - this is a great example of how we can work with industry to get treatments to patients as quickly as possible.

“This can only be afforded thanks to the £33.9bn extra we are putting into the NHS, paid for thanks to our strong economy.”

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