Remembering Amanda — and a powerful message for parents
Foundation urges parents to be alert and aware of signs of meningococcal disease
Asign nestled in Barry and Lorraine Young’s flourishing front yard simply says, “There is healing in a garden”. But the healing has been far from simple and only temporary despite the 20 years which have passed since their daughter tragically died from meningococcal disease.
Amanda Young died on October 12, 1997 after contracting the disease at an intervarsity rowing regatta in Penrith. It was just a month after the budding athlete and star student’s 18th birthday and irreparably broke apart a family of three.
“We were a very strong family unit ... it’s still hard to contemplate life without her,” Barry said ahead of next weekend’s annual fete in “Amanda’s Garden”, which sits spectacularly in a natural setting of paperbarks. “She did more in 18 years than a lot of people do in a lifetime.”
But it is in honour of the life she did not get to live where a great legacy is being left. Her parents started the Amanda Young Foundation in the year after she died and it remains in full operation almost two decades later, having raised about $1 million.
The foundation was set up to create awareness about the lethal nature of meningococcal disease, to support survivors, fund relevant local research projects at the University of WA and encourage youth leadership.
Barry’s eyes are often on the verge of overflowing as he talks about his loss.
The 1991 Gosnells High School dux was rapidly compiling a full academic and sport resume. Amanda’s home study, left largely untouched since her death, is filled with trophies, winning horse-event ribbons and the most precious of personal photos, including some with celebrities such as former swimming star Hayley Lewis and Australia’s 22nd governor-general William Deane. There are also pictures of her with her beloved grey pony Beau, who died only last year, aged 38.
“Her study is still as she left it and so is her bedroom,” Lorraine says. “I have not got rid of any of her clothes, I can’t bring myself to do it.
“There’s not a day that goes by where you don’t think of her for some reason or another. She was a pretty amazing kid, involved in everything and you miss her terribly. The weekends became very barren because we were always doing something.”
And there are always reminders of what may have been. “We had a girl come to the garden fete here a couple of years ago and she was here with her husband and their little baby,” Lorraine recalled.
“She completely undid me. I sat there and for about 10 minutes I couldn’t stop crying because I could see Amanda in that sort of situation. That’s something we’ve been denied and she was our only chicken.”
The Youngs, who have had their own meningococcal vaccinations and a subsequent booster, say they have been overwhelmed by people with a positive spirit who have supported them either personally or through the foundation.
One of Amanda’s former rowing co-ordinators sends them a potted orchid every year on what would have been their daughter’s September 6 birthday. A Penrhos College school friend, Kate Fandry, also always sends a note to the Youngs on the same date and recently started working with their foundation after securing funding from the WA Health Department to promote free ACWY vaccinations for 15 to 19-year-olds.
“We did a lot of sports together — athletics, cross country, rowing — we were good mates,” Kate said.
“She was very warm and friendly to everybody. She was just a real delight to have around, just bubbly and always had time for everyone.”
Kate, whose father Norbert was also one of Amanda’s teachers, said she vividly remembered the disbelief she felt the day she was told her friend had died and was now driven to try to make a difference — particularly among teenagers through the free vaccination.
“It was just unbelievable and that’s the thing about meningococcal — it’s just so fast,” she said.
“You’re competing in a sporting event one day and the next day you’re dead. It seems unreal, like it shouldn’t be possible.
“(Teenagers) are a difficult age group to appeal to because, ‘As if anything is going to happen to you’. You really do think it will be somebody else, but it’s being handed to them on a platter.
“If you haven’t already had it (vaccination) through your school, just turn up on the day, get your parents to sign the form and it will be over in a second and you will be protected. Or if you’ve missed it at your school, see your GP.
“We just want to make sure people don’t slip through the gaps.”
The foundation conducts an annual leadership program for 40 WA students and also funds a research student at Sir Charles Gairdner Hospital.
Lorraine fondly recalled giving a talk to a group of Year 9s at Penrhos and then a decade later receiving a card from one of the former students who had contracted meningococcal disease but had made a full recovery. She had just wanted to say thanks for saving her life with the awareness tools to be able to react quickly to the signs.
Studies have shown most similar foundations last an average of three years, but the recent emergence of different strains of the disease has meant the Youngs’ work is far from done.
“Amanda just meant so much to us,” Barry said, lamenting that vaccinations for the C-strain of the virus that killed Amanda only became available five years after her death.
“You very rarely have a C-strain death now and about five or six years ago we said that if we could beat the B-strain, we could retire. Then two years ago, the W and Y-strains appeared from nowhere. It still gives us a reason for being.”
The Youngs want to spread a powerful message among parents to be more assertive in advocating for their children, particularly when faced with medical emergencies. They are convinced Amanda should not have died the day after competing in the WA rowing titles at Canning Bridge. “Be aware, be alert, be assertive and monitor, monitor, monitor,” Barry said.
Lorraine, a long-time WA nurse, said Amanda had come home that night complaining of pain in her legs and a headache. She had sat in her study in front of a heater trying to get warm, not knowing that cold hands and feet are symptoms of meningococcal disease.
After Amanda vomited into a bucket at Armadale hospital, Lorraine told doctors her daughter had been in contact with a meningococcal case while at the Penrith regatta. Lorraine claimed the information was not treated seriously enough by doctors or nurses until it was too late.
Amanda was covered in a purple rash the next morning and died of meningococcal septicaemia.
Amanda’s Garden has become a spiritual source of emotional strength for the Youngs. It started organically straight after their daughter’s death when about 30 Penrhos students arrived at their home with either a yellow or white rose to represent the colours of the school.
“We thought, ‘We’ve got to do this justice’,” Barry recalled.
The plants are now part of a vibrant, winding garden highlighted by a big patch of Amanda Roses, which were bred in Amanda’s birth year of 1979 and are appropriately surrounded by forget-me-nots and Flanders poppies.
The Youngs will run their 19th annual fundraising fete in the garden, on the corner of Margaret and Matison streets, Southern River, next weekend.
They will also host the “Spring Carnival Lunch in the Paddock” in the garden on October 29. All details can be found online at www.amandayoungfoundation. org.au.
You’re competing in a sporting event one day and the next day you’re dead. School friend Kate Fandry
Amanda Young riding her pony, Beau.