BRAVE BOY: Michelle Lemon with her son Elijah, 16 months.He suffers from Prune Belly Syndrome, which has resulted in severe damage to his kidneys.

Elijah Lemon's happy face belies his rare condition, Prune Belly Syndrome, which saw him born without stomach muscles.

As a result, urine is forced back to his kidneys, which have been severely damaged. One kidney does not function at all and the other is failing.

The 16-month-old is also deaf, possibly as a result of drugs administered to treat his condition.

Solo mum Michelle Lemon, from Lyall Bay, says life is a battle at the moment as the family wait for a kidney donor.

She is calling for a change to legislation to make it easier to harvest organs from braindead patients.

"We are playing a waiting game on keeping him alive. I could keep him wrapped in a plastic bubble but I and his two siblings [Michael, 4, and Sophie, 7] have to have some sort of life.

"He has moderate to severe hearing loss. He doesn't speak and is learning sign language."

Because Elijah's syndrome was pre-existing, he falls outside guidelines for dialysis treatment and will eventually require a kidney transplant. That will not happen until he puts on weight – he is 9kg – and has had surgery to improve his overall health.

"He would need muscle transposition surgery, which is done in the US, probably between the age of two and four.

"They take the thigh muscles, leave them attached at the hip, and flip them across the stomach to make abdominals."

Elijah has developed strong back muscles in place of his abdominals to control breathing and hold up his internal organs if he stands.

He is monitored while sleeping, as he often stops breathing. He has been admitted to hospital "dozens of times", usually to have his bladder drained or to be treated for urinary tract infections.

Early ante-natal scans detect Prune Belly Syndrome and pregnancies are usually terminated. But Ms Lemon planned a home birth and had a scan only about six weeks before Elijah was due. "I wouldn't have terminated and I wouldn't have done anything differently."

In most Western countries, braindead patients are kept alive on the assumption they are donors. In New Zealand, medics assume the patient has opted out of donating until the family prove otherwise.

And even if a patient registers on their driver's licence their wish to be a donor, it is not legally binding on their family.

"People tick a box on their driver's licence and think that's enough. So many people die needlessly believing their organs will be used and they're not. It is just wrong," Ms Lemon says.

There were 43 deceased donors of organs last year, 31 in 2008 and 38 in 2007.

Elijah's condition is so rare – Ms Lemon is aware of three cases in New Zealand – that there is no national support group that could help raise funds for overseas trips, operations and transplants.