Meet Kaleb Bussenschutt: the boy who is allergic to food

Sophie Tedmanson in Sydney; Times Online

When Kaleb Bussenschutt's family sat down for his favourite meal of barbequed chicken on Monday night, he had to watch with envy, munching only on a cup of ice cubes.

Kaleb, 5, who lives with his family in Adelaide, South Australia, suffers from a rare allergy that means he cannot stomach any type of food.

Australian doctors are baffled by the child's condition, which arose after his mother Melissa tried to wean him off breast milk when he was an infant.

"I tried giving him a little bit of a Vegemite sandwich or a tub of yoghurt, but it gave him constant diahorrea," Mrs Bussenschutt told The Times. "I knew something wasn't right so I took him to hospital and they did a biopsy of his stomach and it showed that it was quite red and inflamed and full of ulcers."

Doctors initially thought Kaleb was milk or soy intolerant, so put him on a series of diets, including one consisting only of organic foods, but nothing seemed to work.

"We've tried everything," Mrs Bussenschutt said. "But from about the age of 18 months through to 5 he just increasingly got worse."

Kaleb's condition became so bad last December that the Bussenschutts admitted him to hospital, where he did not stop vomiting for a week and would wake at 3am screaming in pain.

Doctors concluded that he suffers from multiple food allergies and intolerances and severe malabsorption, which means his body cannot cope with food. They are continuing to conduct tests to determine why he reacts so badly to food.

"All the doctors will tell me is that Kaleb is a very complicated child. No one knows what is wrong with him," Mrs Bussenschutt said.

Food allergies affect about one in 20 children, but the doctors treating Kaleb said that the severity of his condition was very rare.

Dr Paul Hammond, a paediatric gastroenterologist from the Women's and Children's hospital in Adelaide, has treated Kaleb for the past four years and said he had never seen anything like it.

"We do sometimes see this in babies but for someone of Kaleb's age it is incredibly rare," Dr Hammond said.

Until they work out what is wrong with him, Kaleb is being fed Elecare — a formula-type food full of nutrients and calcium — through a machine attached to a 'peg' on his belly button, which pumps it directly into his stomach 20 hours a day.

A nurse — or his mother — is on hand at all times to attend to his feeding apparatus, which is moved into a backpack during the day to allow him more movement.

At school a nurse monitors the machine, which needs replacing every three to four hours. For an hour at lunchtime the nurse removes the backpack so that Kaleb can run around the school playground and enjoy a brief period of normality.

The only thing Kaleb can stomach is water and a particular brand of lemonade.

When the family goes out for dinner — which is rare so as not to upset him — he eats crushed ice, which also helps to exercise his face muscles.

He cannot have birthday cake. When Kaleb turned 5 in February, his parents threw a party at the beach and hired a clown to entertain the children, but asked guests to bring picnic baskets with their own food, so as not to upset their son.

"Kaleb still wanted to have a birthday cake, but he wanted his sister to eat it instead," Mrs Bussenschutt said. "You just have to improvise."

His father, Scott Bussenschutt, said that the one thing Kaleb missed about eating was not lollies or chocolate or pizza, but barbequed chicken, which he once ate — but which made him violently ill.

"We have it about once a week and when we have it he just gets his ice and chews on that while he sits down and watches The Simpsons, or whatever is on television," Mr Bussenschutt said.

"Every now and then he'll look at it [food] and sniff it, and sometimes he puts his little nose on the plate and has a smell and says: 'When I'm better dad can I have some of that?'. It's very heartbreaking."

Dr Hammond said it was impossible to give a long-term prognosis for Kaleb until they could diagnosis exactly what he was suffering from, but doctors are positive he may be able to enjoy food in the future.

"We can't know for sure, but we would be hopeful that his food repertoire will be able to improve over time," Dr Hammond said.

Kaleb's parents are planning a charity bike ride from Melbourne to Adelaide early next year and have set up a website - www.kalebsjourney.org - to raise money for research.