Following legal action from families across the UK, the National Institute for Health and Care Excellence is reconsidering making a life-prolonging treatment available on the NHS.
One of those campaigning is a mother from Newcastle, who says she's frustrated that the decision could be pushed back.
Gail Rich's two daughters Nicole and Jessica both have Batten disease, which affects the nervous system. The Rich family are one of many trying to get access to specialist drugs, but the organisation which decides whether to approve the drugs or not, says further investigation is needed.
In a statement, released by NICE on 31 July 2019, the institute said they would update consultees and commentators on discussion progress 'in due course'.
Nicole and Jessica are currently receiving the treatment at Great Ormond Street Hospital in London. A pharmaceutical company is covering the costs of the therapy as part of a 'compassionate use programme' and they go to London every other week for 'infusions'.
Gail and Matthew’s eldest daughter Nicole was diagnosed in September 2016 when she was four years old. The early diagnosis of sister Jessica meant doctors could intervene at the earliest opportunity and she became one of the youngest people in the world to undergo pioneering brain surgery that would allow her to then receive the enzyme replacement therapy.
At the moment, Jessica isn't showing any symptoms of Batten disease. If this continues, it could mean that early intervention would pave the way for future Batten Disease patients.
Gail Rich told ITV News the heartbreak of both daughters being diagnosed with Batten disease.
Watch the special Point of View episode below.