Children like Freddie and Louie

Freddie and Louie

Imagine the elation of finding out you’re having twins, believing your own battle with leukaemia had made it impossible. Imagine the surprise, the excitement, the joy. Imagine three years later your healthy babies are blind, autistic and you are told they will die before you. Twin boys, Freddie and Louie, were gifted to Sarah and Andrew in 2005.

Life was perfect if not a little daunting. They started planning their future like everyone else with holidays and playing in the park. Little did they know what was around the corner… Freddie and Louie Dawkins, now 9 years old, are the only twins in the world with a rare form of Batten disease, a fatal neurological condition with cruel degenerative symptoms. It has meant for the family, enduring over 7 years, blow after blow as the disease develops. First learning your children have autism then only being able to stand and watch as they lose their vision… and their smile. How do you explain to any child, let alone two with autism who cannot speak, why one day they can see Postman Pat and the next they cannot?

It took three years for the boys to smile again but those smiles gave the family hope. It was Freddie and Louie learning to love music in a way no one could ever understand that made the difference.

The family spend most weekends seeking out music events and now with the support of the Amber Trust, benefit from critical music therapy which brings not only great pleasure to the boys lives, but helps their learning and development and enables them to reach out to the world.

The family is the first in the UK to commission research from privately raised funds into the CLN5 form of Batten; funds are being donated for CLN5 research to the Batten Disease Family Association (BDFA), the only UK charity dedicated to supporting families, raising awareness and funding research into this devastating disease. You can find out more about the family and their battle against Batten on their website: and