The Herald will contribute $1000 to kick-start a major fund-raising effort and is encouraging other corporate sponsors and individuals to do the same.

To give to SIDS and Kids:

*Make a deposit via The Greater Building Society: Account no: 781403687 BSB: 637 000

*Visit the drop-in centre:

78 Stewart Avenue, Hamilton South 2303

Phone 4969 3171

Red nose alert: Mark Richards on the SIDS funding crisis

FOR Mark and Jenny Richards, the pain never goes away.

When they lost son Beau to Sudden Infant Death Syndrome (SIDS) 23 years ago, bereavement support came from an informal organisation, now known as SIDS and Kids Hunter Region.

The help they received then and in the years since encouraged the couple to become patrons.

In recent weeks they have spoken publicly about their links with the organisation, which is struggling financially and faces possible closure.

Jenny Richards said that after a recent media interview, SIDS and Kids Hunter Region manager Helen Rawsthorne rang to see how she was.

Richards told her she was fine.

Then she heard about an elderly woman who had found $100 from her pension to donate to the organisation’s latest fund-raising drive, and delivered it personally to the Hamilton South drop-in centre.

Richards burst into tears.

‘‘It’s something that never goes away,’’ she said.

‘‘You think 23 years later you bury it pretty deep. But it comes to the surface at the most unexpected times.

‘‘And it will be as raw and painful as ever.

‘‘It never goes away.’’

Mark and Jenny Richards are speaking out as SIDS and Kids Hunter Region finds itself in dire straits.

With its finances limited in a competitive charity environment, it can budget only about six weeks ahead, and faces the prospect of being forced to sell its drop-in centre.

The former multiple world surfing champion Richards said he wanted to use his ‘‘limited amount of fame’’ to get the word out about the organisation and its services, and call on corporate sponsors and individuals to donate.

‘‘It’s very nice to be able to do that and make a difference,’’ he said.

‘‘The big problem is there’s no government funding.

‘‘With no government funding, they rely on proceeds from Red Nose Day and donations.’’

The couple said that when Beau died in 1989, aged two months, Red Nose Day – the SIDS and Kids national annual fund-raiser – was in its early years and public awareness of the syndrome was limited.

They are thankful for and proud of the advocacy and awareness about SIDS that has helped reduce deaths markedly in the years since.

But the couple said a family’s need for support could last many years and that, coupled with the organisation’s now wider scope supporting parents of children who die of all causes, including stillbirth and miscarriage, SIDS and Kids was needed in the community now as much as ever.

The couple’s son Kyle, 24, was born before Beau. Grace, 20, and Nathan, 17, followed.

The couple said they could not imagine extending the family without the organisation’s guidance and counselling, and understanding from other parents.

‘‘Because after your child dies, it takes a really huge leap of faith to decide to have another child,’’ Jenny Richards said.

The organisation assisted when the couple’s younger children required sleep apnoea testing.

They said those families experiencing loss now needed to know support would be there in the years to come.

‘‘So it will be an absolute tragedy if this place has to close or even reduce its services,’’ Jenny Richards said.

‘‘Because it’s something that’s so important.’’

SIDS and Kids is a national community-based organisation that provides support to families who have experienced the death of a child during pregnancy, birth, infancy and childhood, regardless of the cause of death. This includes neonatal complications, drowning, fire, motor vehicle accidents, fast-onset illness, a pre-existing but not fatal condition, stillbirth and miscarriage.

The organisation also promotes research, awareness campaigns, advocacy, education and fund-raising.

In the Hunter, SIDS and Kids has its Hamilton South drop-in centre and also offers outreach services throughout the region, stretching from southern Lake Macquarie to the Upper Hunter and Port Stephens.

Nationally, the organisation was founded in 1977, with major fund-raiser Red Nose Day starting in 1988.

The Hunter, which operated a Sudden Infant Death Association in these early years, forged links with other state groups in 1981 and ’82, and a national body formed in 1985.

A drop-in centre opened in Charlestown in 1990, and moved to Hamilton South in 1995.

For much of its history, SIDS and Kids has focused on reducing the incidence of Sudden Infant Death Syndrome.

Through a $16million contribution to research and education, including promoting a safe sleeping for babies message, it has contributed to an about 80per cent reduction in SIDS deaths.

The cause of SIDS is still unknown.

Hunter regional manager Helen Rawsthorne said the organisation was in many ways a victim of its own success and was now struggling for survival.

Services were expanded in the early 2000s to also cover miscarriage, stillbirth and other childhood deaths.

While many people were unaware of the organisation’s scope, Rawsthorne said the expansion tripled the organisation’s workload.

The Hunter service receives about two new referrals a week, as well as offering counselling and continued support to parents and extended family members over many years.

Fund-raising and education services also keep it busy.

While the money has in recent times diminished, the need remains.

Last year, the Hunter service received 105 new referrals.

About 27per cent were associated with stillbirth, 17per cent miscarriage, 14per cent neonatal deaths and 2per cent SIDS.

The remainder were due to accidents (4per cent), chronic illness (1per cent), sudden onset illness (3per cent) or for undetermined or other reasons.

‘‘While the SIDS incidence has reduced, stillbirth and miscarriage hasn’t,’’ Rawsthorne said.

Of the referrals, 42per cent were from hospitals, 27per cent self-referred and 18per cent from the forensic medicine sector.

JOHN Hunter Children’s Hospital neonatal nursery clinical nurse consultant Susanne Wooderson is well

aware of the work SIDS and Kids does in the Hunter.

With 30years’ experience in her field, she has embraced educational links between the organisation and the hospital in promoting safe sleeping practices to parents, and refers grieving families.

‘‘They’ve been fabulous to our mums and dads and little babies that have passed away,’’ Wooderson said.

Services range from providing footprint casts to having a centre for people to drop in.

Wooderson said SIDS and Kids personnel were trained in bereavement counselling, had often experienced the loss of a child themselves and were available in the long term.

‘‘If you go there, they’ve got open arms, they’re going to listen to your story,’’ Wooderson said.

‘‘I think that’s where our parents felt really comfortable.

‘‘Not everybody wanted to do that straight away. Sometimes it’s down the track. But it gives them that option.

‘‘And these are mums and dads that have been through what these people are going through. From miscarriage to stillbirth and neonatal deaths.’’

The hospital had social workers, but it could only do so much, either while families were in their care, or for several weeks afterwards.

‘‘But unfortunately we can’t just keep going on,’’ Wooderson said.

‘‘There has to be another service you can hand on to in the community.

‘‘That’s where SIDS and Kids come in.’’

AFTER more than three decades in the region, SIDS and Kids is surviving month to month.

Collections still being collated from Red Nose Day in June will keep the organisation going for four to five months. A charity ball next month will get it through another eight weeks.

Beyond that, without major sponsorship or corporate backing, is unknown.

The drop-in centre could be closed or sold.

‘‘I’m thinking by the end of the year we’ll certainly have to make a decision as to where we’re going,’’ Rawsthorne said.

In the meantime, the doors are open.

For bereavement support phone 49693171

or email hunterregion@sidsandkids.org