Joy for Newcastle family as treatment for life-limiting illness is made available in the region

• Video report by Helen Ford

A family from Newcastle say their 'dream has become reality' after announcing that a life-prolonging treatment for their two daughters will soon be available at their local hospital.

Nicole, aged 9 and Jessica, aged 5, both have Batten Disease, a rare disorder which causes seizures, loss of speech, reduced mobility and childhood dementia.

For years, Gail and Matthew Rich have had to travel thousands of miles every month to access treatment for their two little girls.

Every two weeks, Nicole and Jessica make the journey from Throckley where they live, to Great Ormond Street Hospital in London. But that will soon be a thing of the past.

From September the girls will be able to receive their bi-weekly enzyme replacement therapy at the RVI in Newcastle.

It has been a long and difficult road to this point.

The family have campaigned tirelessly to ensure their children could access potentially life-saving treatment.

In their fight to save their children, Gail and Matthew were forced to travel hundreds of miles to get treatment for their two girls in different countries. Gail travelled to Great Ormond Street in London with Nicole, while dad Matthew took younger sister Jessica to Hamburg in Germany.

At the time, a pharmaceutical company was covering the costs of the life-prolonging infusions, as the therapy wasn't available on the NHS.

In 2019, after years of campaigning, Brineura was approved for use by the NHS, ending years of uncertainty for the family, who could finally have confidence that their children would receive the treatment they needed to stay alive.

Since then, the family have taken both of their daughters to Great Ormond Street in London, every two weeks to receive their infusions.

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In 2019 Gail Rich took part in our ITV Tyne Tees 'Point of View' series, giving an insight into what it is like to have two daughters with a life-limiting illness.

In the moving interview, Gail spoke about the devastating moment her oldest daughter Nicole was diagnosed with Batten Disease.

Gail also opened up about the challenges the family have faced, campaigning for treatment for their girls to be made available.

At the time of filming, both Jessica and Nicole were on clinical trials for enzyme replacement therapy.

Gail said her daughters' futures lay in the hands of the pharmaceutical companies who could decide to pull funding for the trials at any time.

Gail and Matthew’s eldest daughter Nicole was diagnosed in September 2016 when she was just 3-years-old.

The diagnosis came after the couple raised concerns that at the age of two, Nicole wasn’t talking.

After several tests, doctors told the couple the devastating news that Nicole had Batten Disease.

Three months later, the family were dealt a further blow, as their youngest child Jessica, was also diagnosed with Batten's.

Jessica was able to be diagnosed so early because of her big sister Nicole having the condition. The early diagnosis allowed for early treatment.

Jessica became the youngest person in the world to have pioneering brain surgery to allow her to have the life-prolonging infusions.

As a result of early intervention, Jessica does not have any Batten symptoms.