Aug. 3, 2015, 10:21 a.m.

Honour Lexy and take part in Jeans for Genes Day

A RIVERINA woman has spoken of the mental anguish of losing a grandchild in a moving plea with the community to help raise awareness about genetic diseases.

Yerong Creek grandmother Justine Isherwood recounted the heartbreaking moment she lost her grandchild, Alexis Rawle, at just three days old.

It comes ahead of Friday’s annual Jeans for Genes Day, aiming to raise money to research the more than 6000 genetic diseases, which are collectively the leading killer of children under four.

SADLY MISSED: Little Alexis Rawle at two days old, before tragically passing away from a genetic-related disease the following day. Her grandmother is urging locals to take part on Jeans for Genes Day.

In 2010, Mrs Isherwood was still basking in the afterglow of Alexis’s birth when she received a call from her daughter, Charlotte.

It was three days in and she said she was a bit worried about Lexy; she wasn’t feeding and felt cold,” Mrs Isherwood said.

"Charlotte went to her GP and he advised they take Lexy to hospital.

Alexis stopped breathing on her way to hospital and was unable to be resuscitated by staff.

Her father, Ian Rawle, arrived at the hospital just as his beautiful daughter was declared dead.

Mrs Isherwood was forced to make a six-hour mercy dash from Yerong Creek to Melbourne, where her daughter was living.

I walked in to a little room in the hospital and they (Charlotte and Ian) were just holding Lexy,” Mrs Isherwood said.

All Charlotte could say to me was ‘Lexy’s gone, look what I’ve done."

She didn’t know what the cause was; she was blaming herself.

Profoundly affected by the death, Mrs Isherwood embarked on a crusade to raise awareness – and funds – for the Children’s Medical Research Institute (CMRI).

It’s so important we get the word out there and get some answers; we just have to find them,” she said.

The more the CMRI’s work is highlighted and understood, the more chance families like ours will have answers."

"It’s so unfair this tragedy has happened but we can celebrate in the knowledge that Lexy never knew a day without love.

Charlotte will give birth to the family’s fifth child in the coming weeks.

About half of all Australians will be affected by a condition with a genetic basis in their lifetime.

Deputy director of CMRI Patrick Tam said it was critical more answers were uncovered about genetic disease.

"Knowledge is power. The more detailed and intricate our genetic understanding, the greater our power over genetic disease,” Dr Tam said.

To participate in Jeans for Genes Day this Friday and help raise valuable funds, visit