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  1. ITV Report

Family travel to London for vital treatment: "We have to take the risk, this treatment is keeping our daughters alive"

The government message during this period of partial lockdown is that we should all avoid non-essential journeys.

But what if your children's lives depend on you travelling hundreds of miles for treatment?

That's what the Rich family from Newcastle are continuing to do. Their daughters, Jessica, aged 4 and Nicole, aged 8, have Batten disease.

There is no known cure for the rare genetic condition, which among other things causes loss of mobility and childhood dementia.

Gail Rich and her eldest daughter Nicole Credit: ITV Tyne Tees

Nicole and Jessica travel to Great Ormond Street Hospital in London with their parents every two weeks to receive treatment.

The family are exempt from lockdown measures to allow them to take their children for the life-prolonging infusions.

They normally travel to the capital by train but to reduce the number of people they come into contact with, Gail and Matthew decided to drive their family to the hospital instead.

It wasn't just their journey that was disrupted by the pandemic, with all hotels in London closed, the family had to stay in an apartment.

Four-year-old Jessica Rich at Great Ormond Street with her dad Matthew Credit: ITV Tyne Tees

Enzyme replacement therapy is a life-prolonging treatment, available to children with Batten disease, which can delay the effects of the condition.

If patients are diagnosed at a young age, early intervention can prevent symptoms developing. Jessica Rich was diagnosed at the age of two, after it was confirmed her big sister Nicole had the condition.

As a result, Jessica currently has no symptoms related to Batten disease. it is hoped that with continued enzyme replacement therapy, she never will.

The Rich family had campaigned for a number of years for the Brinuea treatment to be offered to patients on the NHS.

The drug was finally approved in September 2019.

Gail Rich with 8-year-old Nicole, at Great Ormond Street Hospital Credit: ITV Tyne Tees

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

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