Sisters from Newcastle with rare genetic condition no longer have to be treated in separate countries

The Rich Family Credit: NCJ Media

Two young sisters from Newcastle with the same rare disease will finally be treated together after months in hospitals more than 400 miles apart in two separate countries.

Nicole and Jessica Rich have both been diagnosed with Batten disease, a currently-incurable condition which leaves most sufferers unlikely to survive to their teens.

Since January last year Nicole, aged six, has been receiving treatment at London’s Great Ormond Street Hospital (GOSH) after clinching a place on a trial that could add years to her life.

Two-year-old Jessica also managed to get onto a sibling trial in Hamburg, meaning the family have spent almost a year travelling between Germany, London and their home in Throckley, Newcastle.

But now parents Gail and Matthew have finally learned that Jessica will be able to transfer to GOSH for treatment.

The family are also continuing their campaign after the National Institute for Health and Care Excellence (NICE) recommended the drug Nicole and Jessica are on should not be made available on the NHS.

NICE decided there is not enough long-term evidence about the effectiveness of cerliponase alfa to make it available on the health service.

While the decision could yet be reversed, experts have recommended it isn’t approved as it isn’t considered a “good use of NHS resources”.

It means the sisters’ access to the drug remains in the hands of the US drug company, casting doubt over the availability of the drug for children in the future.

A petition started by the Batten Disease Family Association against the NICE decision has now received more than 86,000 signatures, and another review is due in April.