When Kyran was 6 years old he was diagnosed with Retinitis Pigmentosa which is an eye disease in which there is damage to the retina. The retina is the layer of tissue at the back of the inner eye that converts light images to nerve signals and sends them to the brain.  At the time this news was devastating but his family had no idea that worse news was yet to come.

On 15 March 2011 after numerous tests they  were informed the heartbreaking news that Kyran in fact had Juvenile Batten Disease.  This is a rare genetic metabolic neurodegenative disease for which there is no cure.In September 2011 family and friends of Kyran Richmond set up a fundraising team to raise awareness and much needed funds for both the BDFA and Kyran’s ongoing needs.  To date they have raised over £1,000 for the BDFA which will help us support families and facilitate research into this devastating disease.