Our beautiful daughter Rosie was diagnosed in August 2025 with an incurable metabolic disease called Batten CLN2 .

Children with Batten disease suffer with seizures, childhood dementia and will eventually lose their ability to speak, see, swallow and move. Those affected pass away sometime between the ages of 6-16 years old.

Rosie receives fortnightly treatment at Great Ormond Street Hospital which will slow down the progress of the disease and give her a better quality of life.

Newly diagnosed patients will no longer receive the option for treatment. Approximately 5-6 children a year are diagnosed with this devastating disease. Without treatment a child's life expectancy is significantly lower. Their body will deteriorate faster and their suffering will be worse. 

On 12th September 2026 Max and I will walk the 100km Thames Path challenge in a single 24-hour period to raise vital funds for Batten Disease Family Association.

All money raised will go directly to the BDFA who provide essential support services for families including free counselling which we both benefit from. They are at the forefront of the latest research also advocating for early diagnosis and improved patient pathways.

Please support us if you can. Any donation helps towards finding a cure for this cruel disease.