WITHIN 12 hours of realising something was wrong with her seven-month-old baby, a purple rash had spread all over his body and his organs had shut down.
Kylie Pochyly knows too well how quickly the deadly meningococcal disease can strike.
Her son Thorn, now 10, was lucky to survive. He suffered brain damage, kidney failure, scarring and had his foot amputated at the ankle.
But survive he did, and on Friday he’ll wear purple to mark the inaugural National Meningococcal Day.
Coffs Harbour Public School, where Thorn attends classes, will run educational activities to give the children a better understanding of what their schoolmate has been through.
The students will be encouraged to wear purple for a gold coin donation which will go to the Violet Foundation.
The Violet Foundation was designed to raise awareness, support victims and their families and provide funding for research into prevention.
Thorn is excited that everyone will be learning about the disease which has profoundly impacted his life.
“I feel much better since getting the kidney transplant,” Thorn said.
Pointing to his prosthetic leg, which needs replacing every six months, he said “friends can kick me here and I can’t feel it”.
Ms Pochyly said she was grateful to school principal Peter Hickey for agreeing to raise awareness among students.
“Also, I’ll have a stand at the Sensations Cafe (in the BP Service Station at Park Beach) where I’ll be giving out information booklets, key rings, magnets and balloons and collecting donations for the Violet Foundation,” Ms Pochyly said.
“There are so many deaths – we need to make people aware of the symptoms so they can quickly respond.”
From the Coffs Coast Advocate, http://www.coffscoastadvocate.com.au/story/2011/09/01/young-survivor-inspires-hope-meningococcal/
A man who has been working to raise awareness of meningococcal disease received with an Order of Liverpool Award.
Wattle Grove resident Colin Greenway, the founder of the Violet Foundation, a charity that works to assist people who have suffered meningococcal meningitis, was made an Officer of the Order of Liverpool, receiving a silver award at the recent ceremony.
“My goal has always been to raise awareness about the disease and how it can affect anyone,” Mr Greenway said.
“And particularly how people can avoid contracting it.
“Raising money for research for a cure hasn’t been our particular goal because the pharmaceutical companies are already working it; a treatment would be worth a lot of money for them.
“But I’ve always wanted to inform people about how to avoid it.
“Don’t share drinks with anyone except for your life partner and just be really careful.
Mr Greenway learned about meningococcal when he met Jan Buxtom, a Moorebank resident, when visiting his sister in the Liverpool Hospital.
Ms Buxtom contracted the disease in 2000 and lost both her legs and some of her fingers as a result.
“My wife and I decided that we needed to help and spoke to former Liverpool mayor George Paciullo about organising a fund-raiser to help her out.
“He was touched by the story and made that year’s Mayoral Ball a fund-raising event for the family.
“We raised more than $100,000 in cash and kind, which helped the family to remodel their home to make it wheelchair accessible.”
Taken from The Liverpool Champion
Poster-boy Sonny Bill Williams, the darling of female rugby fans for exposing his chest to replace a ripped jersey when the All Blacks played Tonga, is to auction the shirt for charity.
He hopes to raise more than NZ$22,800 ($A17,650) for the Violet Foundation which promotes meningococcal awareness, which would top the successful bid for the handbag used by legendary All Black Tana Umaga in a bar-room stoush.
All Blacks doctor Deb Robinson says she’s been told she is the envy of every woman because she helped put the replacement jersey on, but Williams said he copped plenty of flack from the team for his topless cameo.
“More so from Benny Franks. I think he’s little jealous. He thinks I’m all show no go,” he quipped during a press conference.
Burly prop Franks, sitting next to Williams responded: “Now, he rings me up every morning to go in and help put his jersey on.”