Kerry's son Morgan has an extremely rare condition called Goldenhar Syndrome, which meant he was born with a missing eye and ear. He also has a tracheotomy to help him breathe and a further congenital abnormality known as "butterfly vertebrae", which may cause his spine to curve as he grows.
Doctors feared Morgan would be born so badly disabled they offered Kerry the option of having an abortion right up until the day before he was due. Even after he arrived, they gave him just a five per cent chance of survival.
Despite his physical disabilities, Morgan seems to have been blessed with a keen intelligence, an indomitable zest for life and, most crucially, a mother who refused to go along with a conventional medical wisdom which assumed – wrongly as it turned out – he would almost certainly have no life worth living.
‘The doctors can’t believe he’s alive – never mind attending a mainstream primary school,’ says Kerry. ‘I’m not surprised, though. I know Morgan will do whatever he wants in life.’
Donations allow us to help families and children who have been affected by Goldenhar Syndrome. Because of the lack of information about Goldenhar, parents can often feel very isolated and anxious in the early days and we are here to help and support those families.
Your contribution is very valuable to us and we thank you for your support.
In the first instance please contact Alan Holmes at firstname.lastname@example.org
Registered charity number: 1099642