A mum whose daughters have a rare genetic illness has made a heartfelt plea for people to support a campaign urging NHS bosses to make vital treatment available.

Gail Rich, originally from Carlisle, and her husband Matthew have two daughters - Nicole, seven, and Jessica, three. They both have a condition known as Batten disease.

An incurable degenerative brain condition, over time and if untreated, children with Batten’s suffer mental impairment, seizures and progressive loss of sight, speech and motor skills.

In most cases it will prevent children from reaching their teens. Jessica is on a trial of treatment and had been going to Germany while Nicole gets treatment through compassionate use from the drugs company. The sisters, who also have a brother called Louis, now travel regularly to Great Ormond Street Hospital in London.

The treatment involves a synthetic enzyme being given via a brain infusion.

Gail, 41, who grew up in Carlisle but now lives in Newcastle, said: “We are at the goodwill of the pharmaceutical company as the NHS said they won’t fund it.”

She continued: “People who have rare diseases are disadvantaged because of the guidelines. They haven’t once said they can’t afford it, but that it’s not a good use of money. The short-term data is astonishing.”

However, the treatment is not currently available on the NHS after the National Institute for Health and Care Excellence (NICE), recommended against approving the therapy.

The organisation says there is not enough long-term evidence to support funding it with a fresh bid being turned down last month.

The Batten Disease Family Association (BDFA), the only UK charity working with affected people, are campaigning in an attempt to get NICE to change their minds.

Gail added: “This is life or death for us. It is wrong on every level to deny a proven treatment to a sick child whose like depends on it.

“It’s heartbreaking to know that children of Nicole’s age who did not have access to treatment have sadly passed away. This treatment is saving our daughters life.”

“We have one of the largest healthcare systems in the world and they are abandoning children. It’s available in 21 other countries and in Wales on an individual access basis. Our children are being penalised.”

The BDFA are crowdfunding to support a legal fight to get the treatment implemented. People can support it here: https://tinyurl.com/y2yg5nzg.

To keep up to date with the girls' progress, search Nicole & Jessica's Batten Journey on Facebook.