For the first few months of her life Libbie appeared to be a healthy baby, however at the age of six months she endured her first seizure. This was, at first, attributed to common febrile seizures resulting from a high temperature during teething or a cold, however when the seizures became more frequent and prolonged it became apparent that this was something much more serious.

Kyle and Gillian have left no stone unturned to achieve a proper diagnosis of Libbie’s condition – and this has been difficult as appropriate medical expertise in Northern Ireland is very limited.

Eventually, Libbie’s condition was diagnosed as Dravet Syndrome. This is a condition caused by a gene mutation (SCN1A) and is extremely rare – only six children are known to have the condition in Ireland and even in the USA, where there are more cases, knowledge about the Syndrome and its long-term effects is very limited.

What is known is that Dravet’s Syndrome affects almost every aspect of a child’s life, including cognitive development, mobility, speech and language development and behaviour.

The Libbie Trust is being established to raise funds to be held in trust for Libbie’s future, so that anything and everything possible can be made available for her in terms of treatment, knowledge and care.

The Trust will be administered by a Committee and will work closely with the Dravet Syndrome UK, a charity set up in England for support of UK sufferers and their carers. It is hoped that, in addition to providing care and support for Libbie and her parents, it can also help raise awareness of this Syndrome and help other parents find support and information more easily.