Our daughter Jemiah is 15 years old and was diagnosed when born with Wolf Hirshhorn Syndrome. This is a very rare condition which effects chromosome 4. (Also known as 4P minus) the trust have been a great support over the years since Jemiah was born and other families also have had the support and information needed at a time when most needed.

As this is a rare condition most doctors involved in the care of our children have no knowledge or information to help the child and families and this is a real struggle when all you want to do is help your child. The trust provide help and support when needed in many different ways. Where we live there are 3 other children with this condition so our consultant is very good but not everyone is so lucky and do struggle.

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