Helping George battle Battens disease #theGmanBattlingBattens

George is one of a kind. He loves playing with cars and bouncing on the trampoline with his cousins. He loves watching planes and is fascinated with lawn mowers! He loves spag bol and tuna sandwiches. These are the things that make George unique and so loveable.

George also has Battens disease (CLN8). A truly awful disease.

Battens disease is rare. George is one of only 2 children in the UK diagnosed with the CLN8 strain. It is a neurodegenerative disease. Children with Battens Disease cannot make an enzyme that is responsible for eliminating waste that builds up in the brain. Over time affected children suffer worsening seizures and progressive loss of sight and motor skills. Eventually children with Battens Disease become blind, tube fed, bedridden, and unable to communicate.

There is no cure and sadly George will eventually lose his battle against Battens without getting to experience everything that life has to offer. Children on average pass away between 6 and 12 years. George is 4.

It’s our job to make the time he does have left the best it possibly can be. This is where the off road wheelchair comes in.

George and his Daddy (Simon) love the outdoors. The off road wheelchair will allow Simon to take George on camping trips, for cycle rides along the canal, walks across the fields and a lot more.

To help raise funds for the chair, Georges Daddy and I, along with some friends and family, will be attempting to complete the 10k Reaper run on October 14th, followed by further challenges in the coming year.

I hope you can help George. Any donation no matter how small is greatly appreciated.

Thank you for taking time to read this.

Have fun and #doitfortheGman #TheGmanBattlingBattens

For more information about Battens disease or to donate to the BDFA charity visit the BDFA website at http://www.bdfa-uk.org.uk/