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  1. ITV Report

"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 affects mobility, causes seizures and childhood dementia. 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.

The Rich family enjoying time together Credit: Rich family

There was no known history of Batten in either mine or Matthew's family. Me and Matthew both have a faulty gene that can cause Batten. We didn't know. So each of our children had a 1 in 4 chance of being either a carrier or having the condition.

– Gail Rich

Gail and Matthew’s eldest daughter Nicole was diagnosed in September 2016 when she was three years old. The diagnosis came after the couple raised concerns that at the age of two, Nicole wasn’t talking.

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

Nicole during treatment Credit: Rich family

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.

Read More: Family forced to travel hundreds of miles to treat their daughters' rare disease

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

It's bittersweet because you think, 'why couldn't Nicole have the same chances?' but you have to be thankful. Jessica's abilities and skills have been saved...and that's because of her big sister.

– Gail Rich

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.

Read More: Newcastle toddler undergoes pioneering brain surgery

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.

Jessica is currently showing no signs of the condition Credit: Rich family

We are so proud of Jessica. She's such a little miracle, and she is showing that it could be a cure, although it was never marketed as such.

– Gail Rich

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.

Explaining its own position and reasoning for not providing the treatment on the NHS, the governing body said there was not enough evidence to suggest the drug would have a significant impact.

In the absence of long-term evidence about its effectiveness in stabilising the disease and preventing death...the independent committee considered that the drug was not value for money within the context of a highly specialised service.

– NICE Statement
Gail, Matthew and the girls meeting Health Secretary Matt Hancock Credit: Rich family

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