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In 2015, Ollie and Amelia Carroll were diagnosed with the ultra rare, life-limiting neurodegenerative CNL2 Batten Disease.

CNL2 Batten Disease robs seemingly healthy children of their abilities one by one until ultimately taking their life. Life expectancy is between six and twelve years.

Children with Batten Disease are born healthy and symptoms do not appear until the age of three when speech delay and seizures occur.

Ollie and Amelia’s family have been inspirational in fighting the battle against this cruel disease. The treatment for CNL2 Batten Disease became available in September 2019 on the NHS. The 5 year period for this treatment is due to end in November this year. The family will then continue to battle for this life-saving treatment for their wonderful children.

Mike and Lucy are now making every day count and striving to make their childrens’ lives comfortable throughout the most devastating time. They are creating memories and treasuring their family while they can.

This year I will be running the London Marathon to raise money for the Ollie and Amelia Foundation. My heart breaks for this wonderful family and I hope that the funds raised contribute to supporting the family; helping research to find a cure for the disease and help other families going through the horrendous diagnosis of their own children.