Those of you who know us will be aware of Gray being fine in July 2010 to very ill in August 2010. After many visits to hospitals and numerous tests he was diagnosed with a rare genetic disorder called 'Gauchers.' We were then informed in June 2011 that his condition was treatable with ERT (Enzyme Replacement Therapy), but the NHS (Wales) would not automatically fund it, due to the high cost of his treatment.

It was at this point that our contacting the Gauchers Association became invaluable. The help, support and determination by the staff in getting Gray funding for the treatment required was second to none (confirmed Christmas 2011). They phone us both to see how we are coping, and understand what challenges this disease can bring to a family.

They have helped take the stress away from our shoulders, by acting on our behalf, with those who were charged with making decisions for his treatment and by being there for a chat on the end of a phone. The whole family will be forever grateful to the Association.

Hope to start his treatment in January 2012.

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