Jackson always in their hearts

Richard and Toni Asher think of their son Jackson every day. The toddler was 15 months old when one morning in September, 2003, he appeared to have slept in a little later than usual.

Richard went to wake him and was confronted by every parent's worst nightmare.

''I sort of went in the room and he was lying in his cot and I could tell by looking at him that he'd obviously died and it had been quite a while,'' he says.

''From there, it was a bit surreal. You go into pilot mode. I think I screamed out to Toni and she came running in and I just went straight into our room and made the call to the ambos.''

Nothing could revive Jackson. And nearly nine years later, his death certificate still lists his cause of death as ''unascertained''.

Jackson was too old at the time of his death to be classified as a victim of Sudden Infant Death Syndrome, which applies to infants under the age of 12 months.

But with some vigorous research and lobbying by his parents and former SIDS and Kids ACT chief executive Karen Faichney, they were able to convince SIDS and Kids as a national organisation to look into another classification, Sudden Unexpected Death in Childhood (SUDC), referring to the inexplicable death of a child aged over 12 months.

''We fought very hard to get the SIDS organisation to recognise SUDC,'' Toni, 43, says.

''We couldn't find anything. There was research going on overseas but nothing in Australia. It took us about five years to find there was a classification for him.''

While the family will never know the cause of Jackson's death, having a classification for the death provides them with some comfort.

''As a parent, you don't want the death certificate to say nothing. The death should have some meaning, at least have a name to it,'' Toni says.

Richard, a public servant, has been the chairman of the board of SIDS and Kids ACT for the last two years and has seen some acceptance of SUDC nationally.

''That term now is getting more and more accepted through the organisation,'' he says. ''It hasn't been accepted yet by coroners. That's where I'd like to see it go to.''

Jackson was Richard and Toni's third child. Dylan was seven at the time and Mitchell four. Toni, a stay-at-home mum, was also 27 weeks pregnant with their fourth child.

They were well aware of the safe sleeping principles around SIDS and Jackson slept in a cot unadorned with bumpers or toys. There was little anyone could do to keep a 15-month-old sleeping on his back. And, in any case, the couple thought the danger period had passed. Jackson was found on his stomach but as to how he died, there were no signs, no clues.

''We'd always been conscious about safe sleeping and you think once they get to 12 months, that they're safe,'' Richard, 42, says. ''That you're home and hosed sort of thing.''

Toni says she was ''still very much in my grief'' when she gave birth to their fourth son, Bennett, 11 weeks after the death of Jackson.

''For the other children, you have to keep moving, you can't stop,'' she says. ''It was an extremely difficult time in our lives, that's for sure. I wouldn't wish it on anyone.''

There was also the toll on Jackson's older brothers.

''Our main concern then was for Dylan and Mitchell,'' Richard says. ''Toni and I had each other, which was good. That's how we got through it.

''We tried not to hide anything from them. If they asked a question, we tried to answer it as honestly as we could. If we didn't know, we tried to find out the answer. They were struggling as well.''

Yet it was still impossible to explain why Jackson had died.

''We didn't understand ourselves so we couldn't give them a reason why,'' Toni says.

Part of the way the family coped was to start the Prostyle SIDS and Kids ACT Golf Day in memory of Jackson in 2004. It is held every April and has raised more than half a million dollars for SIDS and Kids. The initial motivation was to raise money to help the siblings of children who have died from SIDS or SUDC. The first year's proceeds helped to fund a national booklet offering advice for siblings.

''Not that they're forgotten but there wasn't a real lot there,'' Richard says.

That fund-raising event has helped the family. ''It feels like I'm giving back,'' Richard says. ''I guess it's a matter of not making his death meaningless.''

There are photographs of Jackson around the Asher's Bonython home. There is a fifth son now, Brady, seven. All the boys are aware of Jackson. Richard says his little boy had been like an old soul.

''We often said that he'd been here before,'' he says.

''He could be a real boy's boy. He used to have a rocking horse in his bedroom and he used to move it across his bedroom floor he rocked it that hard. But he'd also be real cuddly. We miss him.''

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