Family's mission for NHS miracle drug in memory of little daughter

A TYNESIDE family are determined to continue to fight for a life-changing drug to be available on the NHS in memory of one daughter and because it has been a “miracle” for a second.

- By SAM VOLPE

Throckley-based sisters Nicole and Jessica Rich both had the incredibly rare condition Batten disease.

Nicole died in late 2023 due to the impact of the disease aged just 11. Because her sister had the condition, Jessica, nine, was one of a tiny number of children worldwide to take part in a trial which saw siblings tested.

As such, as an infant she was able to access treatment through an enzyme replacement therapy drug called Brineura. This helped her elder sister prolong her life, and because Jessica started with it so young, she has defied all expectations and is going from strength to strength.

If left untreated, Batten disease causes the sufferer to slowly lose their eyesight and ability to walk. It is progressive, and means a child with it has a typical lifespan of just six to 12 years.