THE parents of a North-East boy who has one of the rarest inherited diseases is backing today’s Jeans for Genes campaign to raise money for research into genetic disorders.
It was bad enough when Kyran Richmond, from Chilton, County Durham, started having seizures on holiday in Tunisia last year, but his parents were then told he had Batten’s disease, one of the rarest genetic disorders in the world.
Today – on Jeans for Genes Day (J4G) – Kyran’s family is helping to raise awareness of the condition, and funds.
Money raised by people wearing jeans to school today will go to the Batten Disease Family Association (BDFA), which provides information and support to families.
When Kyran was suffering his first bout of seizures – during a family holiday in Tunisia – local doctors had no idea that Batten’s disease even existed until his mother, Debbie, drew their attention to the BDFA website.
Mrs Richmond said: “It was such a lifeline to have access to the BDFA via Facebook while we were in Tunisia. Other families sent us messages of support.”
Mrs Richmond, Kyran’s father, Carl, and his brothers, Cameron and Hayden, will be supporting Jeans for Genes Day.
Kyran’s grandfather is holding a J4G Day at Spennymoor Comprehensive School, where he works, and Kyran’s grandmother is holding one at the local Asda store, where she works.
Now in its 17th year, J4G Day aims to raise £2.5m for Genetic Disorders UK, which supports services for families affected by genetic disorders and research.
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