Kyran was born healthy on 8th June 2003, and reach all his major milestones. However, 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. At the time this news was devastating but we had no idea that worse news was yet to come.
On 15 March 2011 after numerous tests we were informed the heartbreaking news that Kyran in fact had Juvenile Batten Disease. This is a rare genetic metabolic neurodegenerative disease for which there is no cure.
Kyran now has little vision in one eye and this has rapidly decreased in the last year and blindness is inevitable. He suffers from night terrors and epilepsy and will lose the ability to walk, talk, eat and see, before developing dementia and symptoms similar to Parkinsonism. His life expectancy is late teens/early twenties.
Kyran is only the third person in the North East to be diagnosed with this disease and there have only been 200 people diagnosed in the whole of the United Kingdom. He lives in Chilton, Co Durham with his parents and 2 brothers.
In October 2011 family and friends set up a fundraising team to raise awareness and much needed funds for both the Battens Disease Family Association and Kyran’s personal trust fund for his ongoing needs. As so few people are affected by the disease it is classed as "orphan" disease because it is not recognised enough to put a lot of research into helping find a cure. The BDFA receive NO government or NHS funding and relies heavily on donations.
Thank you for visiting the website.
After seeking legal advice, could anyone who is arranging separate fundraising events or would like to make a donation please complete the Donation Declaration Form to state how you would like the money to be spent.
Also could you please make sure that you state clearly on any Promotional Material, how you wish the money to be spilt (eg, BDFA/Kyran or Kyran, or Kyran's Family) - This is to ensure that no claim for misuse of funds is made against us.
Thanks for your understanding.
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