The key moment that set all of this in motion was the day I decided to participate in the Duke of Edinburgh Award Scheme. The scheme consisted of a number of sections with service being one of these. I discussed it with my mother and what was expected of me. My mother told me about her friend who had a child with Angelman syndrome (AS), also known as the smiling disease. AS is a neuro-genetic disorder characterized by intellectual and developmental delay, sleep disturbance, seizures, jerky movements (especially hand-flapping), and frequent laughter or smiling, and usually a happy demeanour. People with AS are sometimes known as "angels", both because of the syndrome's name and because of their youthful, happy appearance. There is currently no cure available. The epilepsy can be controlled by the use of one or more types of medication. However, there are difficulties in ascertaining the levels and types of medication needed to establish control because AS is usually associated with having multiple varieties of seizures, rather than just the one as in normal cases of epilepsy. Many families use melatonin to promote sleep in a condition which often affects sleep patterns.
Having researched the condition and viewed a number of images on the internet, I wasn’t too sure about it at first but felt that it was at least something that I should try because as the section of the award quite clearly stated it was about learning how to give useful service to others and be a responsible, caring member of the community.
I spoke to the child’s mother and we arranged a day later that week for me to visit the house and meet Sean for the first time. I have to admit I felt a certain amount of trepidation and possibly a little uneasy, mainly because Sean’s mother had said that he had a tendency to bite and had quite a great deal of strength.
As soon as I walked into his room and saw his happy, innocent smile, all my fears were allayed....