Outside the sun shines on the manicured lawns and sparkling swimming pools of Ballito, KwaZulu-Natal, and inside the hospital room three-year-old Jason Long screams blue murder.
“He has a high pain threshold so when he cries I know he’s in real pain,” she says.
The dummy is the only thing he’ll put into his mouth, she says. He hasn’t eaten since he was eight months old and until he had an operation in September 2008 he drank only enough to survive.
As a baby he suffered from severe reflux and the lining of his oesophagus and stomach was burnt. It hurt so much he refused to eat. The acid problem was fixed 19 months ago but he still eats nothing.
Doctors say his problem is a tough one to solve and Jill and husband, Bruce, are at their wits’ end. If it weren’t for the feeding tube permanently inserted in his stomach Jason would have starved to death a long time ago.
Jill and horticulturalist Bruce were over the moon when she conceived. It was a pregnancy beset with problems and at 31 weeks doctors decided Jason stood a better chance outside than in. He weighed barely a kilogram when he was born in June 2007. He was in the paediatric ICU for 84 days.
At home they had a difficult time trying to feed him. They did their best but he would flick his body or turn his head from side to side and refuse to drink.
An operation in September 2008 solved the reflux problem and a feeding tube was inserted to help him ingest food while he was recovering from the procedure. Jill believed it would be the end of the problem but months later Jason is still dependent on the tube.
There is light at the end of the tunnel: therapy for oral aversion at the University Children’s Hospital in Graz, Austria. But Jason’s parents don’t have the money for the treatment.
“Each day the kids are fed less and less through their tubes until they’re so hungry they eat. It’s a cruel, cruel treatment but it works,” Bruce says.
They are now trying to raise money through a website (www.jasonsjourney.weebly.com) that has reports on Jason’s progress.