BiographyWilliam was born 1 day before his due date in 2007 after a easy pregnancy. It was clear from the moment he was born that something wasn't right, he was very floppy, couldn't open his left eye and cried constantly. After 2 weeks at home we were re-admitted to hospital as he was continually being sick and had chronic diarrhoea and was losing weight. After many tests over the next two years it was found that William had a number of conditions, he has a rare genetic condition called Coffin Siris syndrome which effects all his body systems in some way, some more than others.
He was unable to walk until he was 3 1/2 and still has difficulty now and uses a wheelchair some of the time, he suffers from fatigue very easily. He has developed seizures over the past two years and also had to have a gastrostomy placed last year as he is unable to take fluids orally and has to take a lot of different medications throughout the day.
He is completely non verbal but is making amazing progress using his communication book! Over the past seven years he has been through so much, 14 operations, 18 GA's and every test you can think of at hospitals all over the country but through it all William has a smile and charms everyone he meets!
|