"What it's like having two daughters with a life-limiting illness"

Point of View is an ITV News series where we invite people to share their life experiences and what they've learned from them.

Gail Rich is a mum of three from Newcastle. Her two daughters, Nicole and Jessica, have a rare genetic condition called Batten disease. Her eldest child, Louis does not have the condition.

Batten disease effects mobility, causes seizures and childhood dementia and there is no known cure for the disease. This is her story, about what it’s like having two daughters with a life-limiting illness.

Nicole Rich was diagnosed with Batten Disease aged three Credit: Family photo

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.

ITV Tyne Tees has followed the Rich family as they campaign for a life-prolonging treatment called Enzyme Replacement Therapy to be made available on the NHS.

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’. They go to London every other week for ‘infusions’.

Prior to this, Gail and her husband Matthew were forced to separate every two weeks to take their girls to different hospitals in different countries for the life-prolonging treatment.

Jessica was able to be diagnosed with Batten disease so early because of her big sister Nicole having the condition.

Matthew Rich with his daughters Jessica and Nicole Credit: Family photo

The early diagnosis has meant doctors could intervene at the earliest opportunity. Jessica 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.

'Trailblazer' Jessica Rich is currently showing no symptoms Credit: Family photo

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.

The family have long campaigned for enzyme replacement therapy to be made available on the NHS for the 13 children in the UK, who are currently living with the condition. The treatment has previously been rejected by the health governing body NICE, who said it was too expensive and there was not enough long-term data to prove that the treatment works.

In May, the Rich family met with the Health Secretary Matt Hancock to discuss the decision by NICE. Credit: Family photo

The family continue to fight for accessible treatment and raising awareness of the condition through the Nicole and Jessica Rich Foundation. They hope to make a difference to other families living with the disease.