Family of youngster with rare condition are seeking help in the community (From Bromsgrove Advertiser)
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Family of youngster with rare condition are seeking help in the community
8:30am Tuesday 10th September 2013 in Local
A BROMSGROVE family whose young son suffers from an extraordinarily rare condition is appealing for help from the local community.
Finnan Boonnak, aged three, has CGD, a congenital disorder of glycosylation which is one of several rare inborn errors of metabolism. There are very few cases confirmed throughout the entire UK.
As a result of CGD, Finnan is not able to walk, and can only speak a few words.
Finnan and his family, including mum Julia, recently went to a CGD conference in Barcelona. There they met other families from the UK who have a member with this rare condition.
The families have decided they want to set up a charitable organisation, and any money raised will go towards grants etc for biochemistry students who want to conduct research into metabolic disorders.
But before the group can even get off the ground, they need a meeting place to discuss where they go from here.
Mrs Boonnak, who works at Bromsgrove School, said: “Six of the families want to meet somewhere, in Bromsgrove, which is the most central location for all of us, during the October half term.
“Unfortunately the school I work at is unable to accommodate us during half half term as it has students staying there so we are appealing for someone who could provide six families with accommodation for the week beginning Sunday, October 27."
Anyone who thinks they can help can email Mrs Boonnak at email@example.com.
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