Newspaper article Evening Chronicle (Newcastle, England)

We Have Made History but We're Not Done Yet; Family's Aim in 2020 to Save - and Improve - More Lives

Newspaper article Evening Chronicle (Newcastle, England)

We Have Made History but We're Not Done Yet; Family's Aim in 2020 to Save - and Improve - More Lives

Article excerpt

Byline: KATIE DICKINSON Reporter katie.dickinson@trinitymirror.com

A YEAR that started in heartbreak ended in triumph for a family who have helped change the world - but next year they want to achieve even more.

Gail and Matthew Rich refused to take no for an answer when health chiefs repeatedly refused to make the drug keeping their two daughters alive available on the NHS.

Their prayers were answered in September after the National Institute for Health and Care Excellence (NICE) ruled that a specialist treatment known as cerliponase alfa will be available for children with their daughters' condition.

When Nicole and Jessica Rich, from Throckley, Newcastle, were diagnosed with Batten Disease within months of each other, their parents believed it was effectively a death sentence. They refused to give up on their girls and the past few years have seen Nicole and Jessica defy the odds.

Since January 2017, Nicole, now seven, has been receiving pioneering treatment at London's Great Ormond Street Hospital after clinching a place on a trial. Several months later Jessica, now four, became the youngest person in the world to receive the treatment after getting on to a sibling trial.

The family spent more than two years battling for their daughters - and other children with the same disease - to have access to the treatment on the health service. But their mission is far from over, and with the treatment secured, in 2020 they want to help bring it to Newcastle, force politicians to rethink the system for securing new treatments, and even help find a cure for Batten Disease.

Gail said: "We had so much going on in 2019, but we had so many positives come from it.

"Winning the Chronicle Champion Family was just amazing, it was a perfect ending to what started as a really tough year.

"Our goal is to bring hope to Batten Disease, raise awareness and to fund research into therapies and treatments - we have big plans for making 2020 our biggest year yet. …

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