Jess Lang lost her daughter Charlie to Sudden Infant Death Syndrome in April 2015. She was 20-weeks-old.
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“Everyone thinks it’s not going to happen to them and then it does,” Ms Lang said. “With Charlie we followed every guideline and there was no way of preventing it.”
Shortly after the death, Ms Lang teamed up with Geelong-based founders of River’s Gift, Alex Hamilton and Karl Waddell, who lost their son River to SIDS in 2011.
The charity funds world-leading research at Boston Children’s Hospital and Harvard Medical School to “stamp out SIDS”, and has sent two Australian researchers to work with the research team in the United States.
Mr Waddell said while the number of deaths from SIDS had declined, so too had the focus on scientific research.
River’s Gift raises money through professional run training programs. Participants are asked to fundraise $400 or $500 depending on the type of training program they undertake.
“(The programs) came about by a friend saying they would love to run in a River’s Gift singlet in the honour of River,” Mr Waddell said. “We had singlets designed and that then morphed its way into hosting the training programs to help people prepare for running events.”
Mr Waddell said the programs had become an “institution” in Geelong and had caused many affected parents to reach out.
“Parents who have lost their little ones are getting in touch through our Facebook page all the time – and it’s just tragic. It tears families apart, it’s heart-wrenching stuff.”
Ms Lang has been instrumental in bringing the training program to Ballarat.
The first was held in the lead up to Run Ballarat and raised $12,000, while the focus for the second program is the Great Ocean Road Running Festival in May.
“We have had different ages, different backgrounds, people who run all the time and people who don’t run at all, anyone can get involved,” Ms Lang said.
Her father Shane, grandfather to Charlie and now Ava, provides a great example.
“(Before the first training program) I had never run in my life,” he said.
“That’s part of the challenge because everyone said there is ‘no way you could do that’ and I’m not a young chicken anymore but I was determined to do it – just to help other families not go through what my daughter has gone through.”
The family is hopeful research will lead to detection and prevention of SIDS.
The 44km and 23km run training programs begin in Ballarat on February 1 and are held for 16 weeks. The 14km and 6km run training programs begin on March 1 and are held for 12 weeks.
For more information visit riversgift.com.