Helping Freddie & Louie battle Battens Disease.
£451 raised
45% of £1k goal
27 contributors
83 Weeks running
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Mud and obstacle runs, with the hope of raising funds for Freddie & Louie in thier battle against CLN5 battens disease. Freddie & Louie are the only known twins in the world with this rare form of a rare disease.

A few years ago I learned of identical twins, Freddie and Louie's story. Two healthy identical twins who would go on to be diagnosed with a ultimately fatal neurological disease "Battens disease"

Batten disease is a fatal, inherited disorder of the nervous system that typically begins in childhood. Early symptoms of this disorder usually appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is often fatal by the late teens or twenties.

Freddie and Louie Dawkins are the only known twins in the world with this rare form of a rare disease. Born perfectly healthy in 2005, they became autistic, blind and recently developed epilepsy. When they were diagnosed in 2009, doctors said that without major advancements in medical science, there was no hope, no treatment and no cure.

Having two young children myself this story really touched me. I cannot even begin to imagine the pain and anguish that their parents, Sarah and Andrew have had to go through over the years. Imagine being told your healthy babies are blind, autistic…and told they will die. Before You. On 21/05/16 I ran tough mudder in honour of Freddie, Louie and their parents Sarah and Andrew. In a hope to raise money for more research in to this horrible disease which hopefully one day will lead to a cure! I have now signed up for another 10+ mile obstacle run and will continue as long as my body will allow. For more information on Freddie and Louie's story visit their website http://www.battlebatten.com 

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