Re­mem­ber­ing Amanda — and a pow­er­ful mes­sage for par­ents

Foun­da­tion urges par­ents to be alert and aware of signs of meningo­coc­cal dis­ease

The West Australian - - AGENDA - Steve But­ler

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.

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.

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