Claire Phillips

Battle Batten with Freddie & Louie

Fundraising for Batten Disease Family Association
£67,856
raised of £50,000 target
Donations cannot currently be made to this page
Event: Virgin London Marathon 2014, on 13 April 2017
We fund research and support families to find a cure to Batten disease

Story

My partner Sarah and I were delighted to find out that we were having identical twins in 2005. When Freddie and Louie were two years old, they were diagnosed with Autism and around the same time, began losing their vision. Soon after, we were told that they have Batten disease.

Batten disease is a fatal inherited disorder of the nervous system to which there is currently no cure. 

Freddie and Louie have the rare form of Batten disease known as late infantile variant CLN5. The doctors know little about CLN5 but have predicted that Freddie and Louie will die before the age of 14. We were totally devastated by this news and our hearts broke in a million pieces. Our boys will deteriorate from this horrendous disease. 

A rare disease often means no funding from government or pharmaceutical companies because not enough people are affected. The Batten Disease Family Association (BDFA) are allowing the money we raise to be used for research into CLN5. We have already raised £20,000 which is enough to commission the first stage of research but we need to do more. For Freddie and Louie. 

Please help us 'Battle Batten with Freddie & Louie' for our children and other children across the globe. 

View our video on http://battlebatten.com; follow me on Twitter http://twitter.com/andrewddawkins (@andrewddawkins) and please tell your friends to like our Facebook page http://www.facebook.com/battle.batten

Share this story

Help Claire Phillips

Sharing this page with your friends could help raise up to 3x more in donations

You can also help by sharing this link on

About the charity

Batten disease is a group of rare, progressive neurodegenerative, genetic metabolic diseases that occur in children & adults worldwide. The BDFA's Vision is to be the central point of excellence in the UK for supporting affected families funding research into a potential cure.

Donation summary

Total raised
£67,855.98
+ £8,390.88 Gift Aid
Online donations
£36,115.98
Offline donations
£31,740.00

* Charities pay a small fee for our service. Find out how much it is and what we do for it.