Jacqueline and Wayne Hemingsley

...changing national policy, so Buccal Midazolam can be administered by social carers.

Our son Aaron was diagnosed with refractorial epilepsy on 2 June 2004. Aaron was on three AEDs and diazepam for rescue. His condition became drug resistant. Unfortunately, Aaron lost his battle for life on 26th March 2008.

Aaron seizures required oxygen, suction and SATs monitored. He had regular admissions to hospital. Unfortunately, the health authority tried to take his oxygen and suction away. The carers were trained in all emergency procedures but couldn’t administer them so would carry oxygen but couldn’t give it to him.

Aaron was a loving child, with a growth disorder and developmental delay. So popular, he had a massive attendance at his funeral and a flypast by RAF Valley, on his birthday today at Hope House Children's Hospice.

My achievement is that we successfully won the policy for Midazolam to be administered by social carers nationally. In his honour, we would like to tell his story and the battles we faced as parents, trying to achieve a care package for Aaron. Social Services and North Wales Health Trust failed him.

Parents with children with severe epilepsy should never have to endure the pressure we endured, during Aaron's short life.