NHS announces treatment for Batten disease will be available to patients this year
"The day we've been praying for has come... we can't stop crying".
It's a battle they say was worth every 'second, minute and hour' of campaigning for.
The Rich family from Newcastle have shared their elation on social media after the NHS announced life-prolonging drugs to treat Batten disease will become available on the NHS to patients this year.
In August, the family launched High Court legal action to overturn the decision not to recommend the funding of potentially life-saving treatment.
The Rich family shared the NHS England statement on social media.
What is Batten disease?
Batten disease is a rare, fatal, inherited disorder of the nervous system that typically begins in childhood.
Those diagnosed with the neurodegenerative condition aren't expected to live past the age of eight to 12.
It is estimated that only 30 people in the UK have the disease. There is no known cure for the disease.
What are the symptoms of Batten Disease?
- Seizures
- Changes in personality and behaviour
- Dementia
- Speech and motor skills problems that get worse over time
How will the treatment help?
The treatment has proven to be extremely effective with it appearing to halt the degenerative effect of the disease in both of them. It is estimated the treatment could help people with Batten disease live for 60 years.
Nicole and Jessica are currently receiving the treatment at Great Ormond Street Hospital in London.
A pharmaceutical company is currently covering the costs of the therapy as part of a 'compassionate use programme' and 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 life-prolonging treatment.
Health Secretary Matt Hancock said:
Meindert Boysen, director of the Centre for Health Technology Evaluation at NICE, said:
Point of View is an ITV News series where we invite people to share their life experiences and what they've learned from them.
We shared Gail's story, about what it’s like having two daughters with a life-limiting illness.