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In May 2012 my wife Michelle and I lost our baby daughter Maia May to the extremely rare neurological condition of Pontocerebellar Hypoplasia (PCH). Maia was only eight and a half months old. All children born with PCH have a vastly restricted life expectancy and those with the particular type of PCH with which Maia was born do not live past infancy. During the short time that we were blessed with our daughter and in the very difficult times after her death we were, and continue to be, indebted to the Joshua Deeth Foundation. The Foundation is the world's only Charity dedicated to providing emotional and financial support to the families of children with PCH. Set up by the parents of young Joshua, who also lost his fight against the condition in November 2009, the Foundation aims to finance the construction of a specially equipped 'Holiday Home' in the UK. It is envisioned that PCH babies and their families will be able to access this facility and experience what for the majority will be their one and only family holiday. The Joshua Deeth Foudation has also recently funded a whole years research for Dr Baas, the leading specialist in PCH by giving him a cheque for 50,000 euro, raised through the charity. The charity also runs "PCH meet ups". This is a special way for parents to talk about their situation, ask advice, and generally feel like they aren't alone. This year, due mostly to the funding that The Joshua Deeth Foundation has raised, Dr Baas will be attending the meet up.

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