Kade just grins

By Paul Dunlop
A BRAVE young Pakenham boy is fighting an illness so rare his doctors have named it after him.
Kade McKillopSimpson has spent half his life in hospital because of a mystery condition that stops his gastric system emptying.
Kade’s stomach does not open properly to allow food to pass through, prompting agonising spasms and vomiting when it becomes full.
It has been a hellish start to life for the 16monthold, whose brave battle with “Kade syndrome” has also turned the lives of parents Tammey and Glen upside down.
Kade is one of the faces of this year’s Royal Children’s Hospital Appeal.
Doctors believe the bubbly boy’s illness could be a world first.
His anxious parents, already so proud of their young son’s courage in the face of his pain, are clinging to the hope a cure can be found.
“It’s been a nightmare. He can’t keep living like this,” Tammey said.
“He’s only been with us such a short time. Hospital is part of his life now and it shouldn’t be.”
Kade first suffered problems at just nine days old. Doctors initially believed it was reflux but his parents were convinced something far more serious was wrong.
“We tried all sorts of things but he wasn’t getting better,” Tammey said.
For months, Tammey and Glen, who have three other children, have made weekly trips to hospital where a series of doctors have sought to diagnose their son.
“As far as we know he’s a world first. Nobody’s ever come across it before,” Glen said.
“At times he looks so normal and so well, but he seems to be getting sicker. He doesn’t want to eat or drink anything because he knows it causes him pains.”
Kade has enjoyed periods of normal eating but the condition can strike without notice. He needs to be fed by a tube to his stomach.
Doctors remain optimistic that Kade can pull through and that he will improve as he develops.
But the emotional strain is hardest for his parents who are keeping their fingers crossed that a new series of tests will finally shed light on their son’s condition.
Tammey said the hardest part was not knowing what was wrong with Kade.
“When he’s feeling well you wouldn’t think there was anything wrong with him,” she said.
“He’s happy and laughs, he’s beautiful.
“Then he has days when he’s not well, he’s lethargic and can hardly move. All he is doing is surviving.
“Some days you think, ‘Why us?’ — or why him really. He’s the one who has to go through so much. The pain he has to handle pushes us on.”
Glen, an electrician, has had to take time off from work but said his employers had been extremely supportive through what has been a very tough time.
The family has pulled together, with Kade’s siblings Samantha, 12, Cody, 10, and Tahlee, 6, also supporting their baby brother, showering him with love and affection.
“He definitely gets lots of attention, not only from us but all of the nurses at hospital as well. “They’ve been fantastic,” Tammey said.
>>> The Royal Children’s Hospital Good Friday Appeal raises funds to help ill children such as Kade. To register your support, contact the Gazette on 5945 0666.