内容摘要：Ms Hammond said she had "thoroughly enjoyed" working for the service and felt she had achieved what she set out to in her career.

Ms Hammond said she had "thoroughly enjoyed" working for the service and felt she had achieved what she set out to in her career.

Managed Access Agreement (MMA) between NHS England and the drug's manufacturer BioMarin is set to expire in May, although "constructive" discussions over permanent access continue between the parties, according to the National Institute for Health and Care Excellence (NICE).CLN2 Batten disease is estimated to affect about 40

, with average life expectancy about 10 years.Those with the condition appear to develop normally for the first few years of life, but can then deteriorate quickly and experience progressive dementia."It's devastating for families to receive that diagnosis," said Liz Brownnutt, chief executive of The Batten Disease Family Association (BDFA).

Flory's fortnightly treatment at Birmingham Children's Hospital gave the "incredible, Peppa-Pig-obsessed" six-year-old a "fantastic quality of life", Phoebe said."She is still able to walk, she is still able to communicate in her own way. She's still able to eat, and flick pages of a book.

"Her gross motor skills are impeccable. She can pick out a pea from a sweetcorn... she goes to school and she enjoys swimming and going on walks.

"None of this would be possible without Brineura."His vehicle has since been found, but a spokesperson for Northumbria Police said: "It is believed in his attempts to escape he has been swept away and tragically died."

Search teams gathered from first light and are scouring the banks of the river from the ford between Bolton and Abberwick, all the way to the sea at Alnmouth.Officers from the coastguard joined the search using a dinghy, accompanied by a trained dog.

A water level indicator at the ford showed the river was still more than 1ft (30cm) deep, but it would have been much higher at the weekend during the storm.His wife Anna and family thanked police, friends and the local community for their help and support.