SUNBURY boy Harry Payne has defied medical odds and his family is working hard to raise money for much-needed research into his condition.
Harry, 4, has a rare early brain development condition called microcephaly with simplified gyral patterns (MSG).
"Basically it means small head, small brain and small folds of the brain," explained Harry's mum, Fiona Handbury.
Harry wasn't expected to survive, let alone thrive, but now he is a healthy boy who attends kinder twice a week.
Harry's grandparents have donated $100,000 for the first year of a medical research project to be conducted by The Murdoch Children's Research Institute.
The institute has matched the donation but another $300,000 is required for the final two years of the study.
"He's definitely delayed in terms of his language and social skills, probably tracking around 22months," Ms Handbury said.
Harry works on bridging the developmental gap through early intervention programs at the Sunbury Community Health Centre and attends speech pathology, physiotherapy and occupational therapy.
Physically he is a little different. He stands at just 85centimetres and weighs 9.8kilograms - the weight of a typical 10-month-old.
"On top of the MSG, which is a diagnosed condition, Harry is also very small. Even for children with this condition he is very tiny,"Ms Handbury said.
"MSG is reasonably rare. In Australia there are probably only a handful [of cases] that we're aware of. But the MSG with Harry's size, he's the only one they're aware of in the world."
Doctors discovered there was something wrong with Harry when Ms Handbury was 23 weeks pregnant.
An MRI 30 weeks later diagnosed MSG.
Doctors did not expect Harry to survive full-term and if he did, it would not be for long.
Ms Handbury and Harry's father, Richard Payne, tried to find out more about their baby's condition, but found there was no information about what to expect.
Harry was born via caesarean section 34 weeks into Ms Handbury's pregnancy.
He weighed 1760grams, breathed unsupported, fed well and gained weight.
"The life expectancy of someone with MSG is two years.
"He's clocking 4. You would assume that he's going to be around for awhile because he is so healthy," Ms Handbury said.
Harry's development has surprised everyone, and his doctors are inspired by his progress.
Harry's family is working with the MCRI to raise money for the new research project.
To get government funding there needs to be three years of research completed. Researchers had already made discoveries in the project's first year.
Harry and his family are hoping the research will answer some questions about his condition.
"Not knowing what his life expectancy is, or how long his health is going to maintain at this level, or what the long-term prognosis is - will Harry go to school, will Harry
become independent? - those sorts of questions is why the research is so important," she said.
"I guess like any mother, I just want to know how long I've got him for."
May's fund-raising event has been postoned until further notice.
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