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

The family of terminally ill sisters from Throckley are having to travel hundreds of miles to two different hospitals to treat their daughters.

Nicole and Jessica have Battens Disease, a rare disorder which causes seizures and childhood dementia.

Jessica seen on the left and Nicole Credit: Family photo

Nowhere currently offers a treatment programme for siblings with the condition, forcing parents Gail and Matthew to take their children to separate hospitals in different countries.

One is in Germany and the other is Great Ormond Street Hospital in London.

Gail and Matthew also have a son Louis who is not affected by Batten Disorder, meaning they rely heavily on family and friends for support in looking after him when they have to travel for treatment with their daughters.

Dad Matthew, Louis, Nicole, Jessica and Gail Credit: Family photo

In May, younger sister Jessica underwent pioneering surgery to delay the effects of Battens.

At 18 months old she became the youngest person ever to undergo brain surgery of that nature - having the procedure in Germany.

Jessica Rich Credit: Family Photo
  • Newcastle toddler undergoes pioneering brain surgery

Jessica and Nicole will need to receive intense enzyme replacement therapy for the foreseeable future, in a bid to delay the effects of Batten Disease.

Common symptoms are:

  • Severe seizures

  • Loss of mobility

  • Childhood dementia

  • Loss of speech

  • Poor eyesight which may result in blindness

The Rich family now hold out hope that the NHS will introduce a programme to treat the effects of the rare disorder.

Until then the family will be forced to travel almost 600 miles every two weeks, separating their daughters between Germany and the UK.

Fundraising ball for Batten Disease Credit: The Rich Family

You can follow the girls journey on their facebook page and website.

The Rich family have organised a ball in aid of the Nicole Rich Foundation.