This is Rosie. She's a gorgeous almost 5 year old who we first met at the local nursery our daughter attended. Rosie and her lovely parents Emma & Max are part of a close knit group of families who became friends there.

Tragically, 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 this 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.

Watching Rosie and her family face this disease with such courage has inspired this group of friends to take on an extreme physical challenge to raise vital funds for Batten Disease Family Association. They will walk the 100km Thames Path Challenge in a single 24-hour period this coming Saturday, 12th September.

Graham and I will be joining them and attempting to get as far as we can...

All money raised will go directly to the BDFA who provide essential support services for families. They are at the forefront of the latest research, and advocating for early diagnosis and improved patient pathways.

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