Couple keen to help find cure to rare iron disease

INFANT TRAGEDY: A Neonatal Hemochromatosis Society fundraising golf day was held at Sandy Gallop Golf Club.
INFANT TRAGEDY: A Neonatal Hemochromatosis Society fundraising golf day was held at Sandy Gallop Golf Club. David Nielsen
INFANT TRAGEDY: A Neonatal Hemochromatosis Society fundraising golf day was held at Sandy Gallop Golf Club.
INFANT TRAGEDY: A Neonatal Hemochromatosis Society fundraising golf day was held at Sandy Gallop Golf Club. David Nielsen

AN IPSWICH couple who lost their firstborn to a rare medical condition has raised more than $15,000 for research.

After Gary and Kelly Hiles spoke about the death of son Marcus from neonatal hemochromatosis (NH) earlier this year, supporters came from all corners to offer help.

On top of private donations - one for $1000 - more than 140 people took part in a fundraising golf day at the Sandy Gallop Golf Club yesterday.

"We set ourselves a goal to raise $10,000. At last count, we were up to $15,000," Mr Hiles said.

"The figure is still rising because we haven't done our auctions, cakes sales and raffles yet."

Money raised from the day will go toward research into NH, a condition in which toxic levels of iron accumulate in the unborn baby's liver.

If it does not result in a stillbirth, NH usually kills the infant within the first few weeks.

Making matters even worse, mothers affected by the condition once have a greater-than 80% chance of having a subsequent child with NH.

The Hileses' story struck a chord with Brisbane mums Karen Roberts and Nicole Ireland - both of whom have lost children to NH, but have since received treatment enabling them to give birth to healthy babies.

Mrs Roberts said it was important for women to know help was available.

"I really feel for Kelly - to have lost her first child," Mrs Roberts said, "but I have such faith that she will have a healthy child one day."

The treatment Mrs Roberts and Mrs Ireland underwent has been developed by American specialist Dr Peter Whitington of the Lurie Children's Hospital in Chicago.

Women in Australia have been able to receive the treatment through locally based specialists in consultation with Dr Whitington.

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