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Alex - The Leukodystrophy Charity

Alex, The Leukodystrophy Charity, or Alex TLC, was set up by Sara Hunt, a single mum of two sons diagnosed with adrenoleukodystrophy (ALD), the most common of the leukodystrophies, in 2001. Following this most devastating of diagnoses, Sara decided that the only way to deal with her family’s new situation, was to be as positive as possible and do everything in her power to save her boys. Determined not to let ALD defeat their sense of family, she spent the next 12 years making the best of their new “normal”. Nevertheless, the inevitable was not to be escaped and she lost her eldest son, Alex in December 2012 – you can read his story here. What is a Leukodystrophy? Leukodystrophies are genetic disorders that mainly affect the white matter of the central nervous system (i.e. the brain or spinal cord). Most leukodystrophies are degenerative, causing symptoms such as impaired mobility, vision, speech and hearing, incontinence, inability to swallow and loss of cognitive skills. In many cases, this sadly means a reduced or limited lifespan.

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