Caleb s plea for help
Caleb's plea for help

The parents of a young boy diagnosed with a life-threatening condition say they feel cheated after he was denied access to vital treatment.

Four-year-old Caleb Faria, of Sunbury, suffers from Hunter Syndrome, a rare disorder that affects his speech, heart, breathing and movement.

Caleb was diagnosed two years ago with the condition and has been in and out of the Royal Children’s Hospital since.

It is a serious genetic disorder, which affects only boys and sadly there is no cure.

Caleb's mum Michelle told Seven News reporter Anastasia Salamastrakis: "It just destroys all the vital organs in the body, giving Caleb a very short life span."

But there is a drug that can slow its progression and it has made a remarkable difference to other Melbourne sufferers.

The problem is, Caleb has been denied access to the drug Elaprase under the Federal Life Savings Drug Program because he has a severe form of Hunter’s.

His parents are frustrated that he is missing out just because his condition is more severe than others.

"You’d think that someone who is worse off would get a chance or get access to it," Caleb's dad Biju said.

They are now desperately doing all they can to raise half a million dollars themselves to help their youngest child.

His parents say all they want is for him to have a better quality of life.

"We just want the best for our little boy."

Make a donation to Caleb's fund here

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