Heartbreaking picture of the sisters facing fatal dementia
THESE two adorable girls look like any normal pair of sisters. But they are both battling a cruel genetic disorder that causes dementia.
If no cure is found for their Batten disease, then both Jessica Rich, two, and sister Nicole, five, will die before they reach their teens.
The girls are currently on a drug treatment trial which doctors believe may halt the progression of the illness.
But it isn’t available on the NHS – Jessica has to fly to Germany for treatment, and Nicole is part of a trial at Great Ormond Street Hospital in London.
Their mother Gail, 40, who is campaigning alongside the Batten Disease Family Association for the drug to be made available in the UK, said: ‘When Nicole was diagnosed first, we thought that at least Jessica would live the life that Nicole wouldn’t. When we found out she had it too, it was devastating.’
Mrs Rich, who lives with husband Matthew, 30, and their older son Louis, seven, in Newcastle upon Tyne, was thrilled when her daughter Nicole was born in March 2012. However, the youngster was having communication problems and had not spoken a word by the age of two.
By the time her sister Jessica was born in 2015, Nicole had become unsteady on her feet. A short while later, she was diagnosed with Batten disease – and within a matter of months, her sister had been too.
The rare disorder eventually causes sufferers to lose their sight and ability to walk and causes dementia. They are not expected to live into their teens.
Since the diagnosis, Nicole has been accepted on to a drug trial at Great Ormond Street Hospital. It is hoped the treatment could slow the progression of symptoms. Jessica is also getting treatment as part of a trial in Germany.
But unfortunately rationing watchdog NICE has decided the treatment will not be available on the NHS. Mrs Rich said: ‘There needs to be an urgent review to change where funding is allocated. Every child deserves a chance.’