On the 21t May a group of us including Ollie and Amelia‘s big brother will take on the challenge of the Manchester 10k. Some of us have never ran before but we are all up for this challenge to support two incredible children who put up a fight daily.

In 2015 Ollie and Amelia Carroll from Poynton, Cheshire 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 CNL2 Batten Disease are born healthy, symptoms of the disease do not appear until around the age of three when speech delay and seizures occur.

For almost two years Ollie and Amelia’s parents, Mike and Lucy fought for access to a treatment which was proving to slow down the progression of this disease.

Eventually Ollie and Amelia were granted access to this ground breaking treatment on the grounds of compassionate use at Great Ormond Street Hospital London, funded by the pharmaceutical company Biomarin.

The treatment which replaces the missing enzymes within the brain of a child with CNL2 Batten Disease consists of a four hour long brain infusion every two weeks.

Heartbreakingly during the fight for treatment Ollie now twelve lost his ability to walk and talk. He is now fed via a feeding tube which goes directly into his stomach, devistatingly Ollie is now blind.

At the time of starting treatment Amelia became the youngest child in the UK and one of the youngest in the world to receive enzyme replace treatment for CNL2 Batten Disease.

At the age of three Amelia had brain surgery just months after her big brother Ollie and began her battle against battens.

Up until recently Amelia age 10, has remainded stable due to accessing the treatment at such a young age. In July 2021 Amelia became the first child in the world to recieve Enzyme therapy directly into the eye in the hope to save her eye sight.

Sadly this came too late ans over the past 18 months Amelia’s vision has deteriorated and she also registered blind. This has had a huge effect on Amelia‘s confidence and balance. She now refuses to walk unaided.

After a lengthy battle by Ollie and Amelia’s parents and others including professionals at Great Ormond Street Hospital in London and The Batten Disease Family Association which resulted in Mike and Lucy personally taking legal action against The National Institute of Health and Care Excellence. The treatment for CNL2 Batten Disease became available in September 2019 on the NHS for all children with CNL2 Batten Disease in England under a five year managed Access Agreement.

A message from Ollie & Amelia’s parents -

Our aim now is to make everyday count, provide Ollie and Amelia everything they need to make their lives more comfortable and a little easier, to create memories with them and their siblings and to raise the much needed awareness of this ultra rare disease in the hope of preventing other families facing the same fight that we have had.

We thank everyone who supports us during this journey. Our hearts are broken but whilst our children continue to fight we will be right beside them fighting with them.