‘Our Grace will live’ - Chesterfield girl with incurable illness will get treatment on NHS which will help prolong her life after deal agreed

A little Chesterfield girl who has a rare incurable condition which leads to early death will be able to receive treatment on the NHS to help prolong her life after a deal has been struck.

Wednesday, 11th September 2019, 5:32 pm
Grace Thompson 4, at home with dad David and mum Izabela.

Four-year-old Grace Thompson has Batten Disease - an illness which affects the nervous system, causing seizures, visual impairment, mobility loss and early death.

Before today’s announcement, a drug which has been proven to extend the life of youngsters with the inherited condition was not available on the NHS.

But patients will now be able to get access to the drug called cerliponase alfa, also known as brineura, by Christmas at the latest after successful negotiations between NHS England and the manufacturer Biomarin.

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Grace’s mum, Izabela, 37, of Newbold, said: “We won the war. I’m absolute ecstatic. I can’t express how happy we are. Our Grace will live.”

Batten disease takes away vision, ability to walk, talk and hear, and eventually life.

Those who are diagnosed with the condition tend to only live until about the age of 10 or 12.

But brineura can extend life by up to 20 years.

Simon Stevens, NHS chief executive, said: “This is another concrete step towards ensuring NHS patients with rare conditions get access to important new treatments.”

While Professor Stephen Powis, NHS national medical director, said: “This is important news for children and their families suffering from this devastating disease who can now have access to a life-changing treatment, having endured a long wait for the company to make a fair offer.”

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.”