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Battle Batten - Cullum - Charity of the Year

Tuesday, 2nd May 2017

 

Our Charity of the Year for 2017 is Battle Batten. They are a local Charity based in Hucknall supporting young boys Freddie & Louie who were diagnosed with Batten Disease at an early age. The Charity helps by raising funds to help Freddie & Louie with their Quality of life and to gain more knowledge and research into the disease.

 But what is Batten Disease? Batten disease affects 1:30,000 births; approximately 200 people are affected in the UK. Children are born apparently healthy then develop epilepsy, lose their sight, speech, cognitive and motor abilities; before dying between the ages of 6 months and 30 years. There is some research, but no cure at present.

Different forms of Batten disease are classified according to the gene identified as the cause e.g. CLN5 (gene) and the age of the onset of the disease (late infantile). Freddie & Louie have CLN5 late infantile variant which is one of the rarest forms of the disease, they are also the only twins in the world that suffer with this disease.

The boys who are now 11 years old have already been through a life time of difficult experiences that no young child should have to cope with. If you would like to find out more about Louie & Freddie’s journey please search Battle Batten on Facebook. The boys came to visit us on the 28th April with their parents Sarah & Andrew Dawkins.

Bill Rigg, Managing Director presented them with a cheque for £1638 which we have raised so far from through our Christmas Raffle and Aviation print auction.

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