A Crawley boy is the ‘only case’ of a child born with two rare conditions.
Nathan Ghinn-Morris, 3, was born with Edward’s and Jacobsen Syndrome, which have caused him severe physical and mental disabilities.
Some £500 was raised at a special screening of Nathan’s favourite film, Finding Nemo, at Cineworld Crawley on Saturday (June 20).
His father, Stuart Morris, 39, of Nuthurst Close, Ifield, said he was the only case in the world of a child born with the genetic conditions. He said doctors expected his son to only live for two to 15 days.
Stuart explained: “Edward’s Syndrome is classed as incompatible with life, Jacobsen Syndrome is really rare.
“It seems that the two conditions together have been making the Edward’s Syndrome less aggressive.”
Stuart and his partner Sadie, 28, put on the fundraiser to help make their garden safe for Nathan to play in.
Stuart said: “We’ve pretty much accepted he might not even reach double figures - which is why we are trying to do as much as we possibly can to make sure he’s happy and experiences the things the rest of us do.”
Nathan is only 70cm tall, has mental disabilities and uses an electric wheelchair and walking frame. Most of his disabilities were caused by the Edward’s Syndrome but the Jacobsen Syndrome affected his body’s ability to clot blood as well.
Stuart said Nathan had a mental age of a one-year-old and watches his favourite film, Finding Nemo, three times per day at least. He said: “He’s beginning to get quite demanding if Nemo isn’t on the TV.
“It’s one of the best sensory films because it’s so colourful.
“He knows there’s areas which he doesn’t like and he gets excited in other areas.”
Nathan has two half-brothers. Joey, 9, goes to St Margaret’s School in Ifield and Harrison, is a pupil at St Wilfrid’s School in Burgess Hill.
Stuart said: “They treat him like a normal brother. They seem to see past all his problems.”
Stuart and Sadie had five miscarriages and a still birth before Nathan was born on November 25 2011. They found out he had developmental problems when Sadie was 32 weeks pregnant.
Stuart tested positive for a genetic abnormality called balanced translocation which did not show any symptoms but had caused Nathan to have Edward’s Syndrome.
Stuart said: “We were devastated because of the amount of miscarriages before, and learning of the balance translocation causing it was a case of ‘not again’ but at the same time we were so far along in the pregnancy there wasn’t anyway we were going to stop.”