Heartbreak for family as second daughter is diagnosed with fatal condition

Nicole Rich has Batten's Disease for which there is no cure - and now her sister has been diagnosed with the same condition Credit: Family photo

A family from Newcastle say they are completely and utterly devastated after their youngest daughter was diagnosed with the same condition as their four-year-old little girl.

Nicole Rich has already been diagnosed with Batten's Disease - an extremely rare fatal neurodegenerative condition for which there is currently no cure.

Now Jessica has been told she has the same condition.

The family have just returned from a family trip to Lapland with mum Gail, Dad Matthew and brother Louis.

[They've been fundraising](http://Teddy Bear Toddle for Nicole) to give Nicole a chance to live her remaining years to the full with 'bucket list' experiences such as going on the London Eye and horse riding.

Facebook post by Nicole and Jessica's Mum Credit: Facebook/Gail Rich

How common is Batten's Disease?

Approximately 1 – 3 children are diagnosed with an infantile form of the disease each year, meaning there are probably between 15 and 30 affected children in the UK.

Jessica has the late infantile form of the disease - the same as Nicole's.

What are the symptoms and how does the disease progress?

Symptoms can include:

  • An increasing visual impairment resulting in blindness

  • Complex epilepsy with severe seizures that are difficult to control;

  • Myoclonic (rapid involuntary muscle spasm) jerks of limbs;

  • Difficulties sleeping

  • The decline of speech, language and swallowing skills

  • A deterioration of fine and gross motor skills that result in the loss of mobility.

  • Ultimately the child or young person will become totally dependent on families and carers for all of their needs.

  • Average life expectancy for a child with Jessica and Nicole's form of the disease is up to 10-years-old.