Sept. 28, 2013, 11:29 p.m.
BABY Kaije spends three days of the week in hospital receiving blood proteins to help him stay alive.
Kaije, described by his father as a “chirpy” little boy, was born with congenital nephrotic syndrome, a rare disorder that causes the body to swell due to defective proteins in the kidney.
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He has already had one kidney removed, and will need a kidney transplant in the future.
Parents Gregory Archer, 20, and Katelyn Boon, 26, of Youngtown, said they had been to “hell and back” since learning of their son’s disorder.
“Things have got a bit easier. We’ve begun to understand the condition a lot better,” Mr Archer said.
“It is good to see him awake and wanting to socialise with everybody,” he said.
“Since we have been back in Tassie he has been pretty fantastic. It’s a daily lifestyle for us now, and he is pretty good with it all.”
The family lived at the Royal Children’s Hospital in Melbourne until last month, and returned home to a great support base, with family and Mr Archer’s boss Maddy Clarke, from the Totally Irresistible Takeaway, at Youngtown.
Every Monday, Wednesday and Friday, Kaije is hooked up for his infusions through a port that is attached to his body.
Mr Archer said Kaije can receive a kidney transplant once he weighs 10 kilograms.
He said it was really a “wait and see” type situation.
Ms Clarke said she organised a raffle to raise money for the family, with tickets purchased from the takeaway store.
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She said they had already raised up to $3000, with the raffle to be drawn on Tuesday.
To buy tickets or help the family call 6344 6646.