FAMILY ON A MISSION: Lee, Mason and Julie Hayes are raring to go ahead of next week’s Making Waves for PCD fund-raising event.
ORGANISERS behind local efforts to raise vital funds and awareness for a little-known about, and rare, respiratory and lung condition are closing in on their target.
Mildura’s Julie and Lee Hayes – the driving force behind the ‘Making Waves for PCD’ fund-raising event – say they expect to raise between $10,000 and $12,000 through the event.
PCD – or Primary Ciliary Dyskinesia – is considered one the world’s silent and rare health conditions, with not a lot known about the disease, and no known cure currently in existence.
The Hayes’s four-year-old son, Mason, was diagnosed with PCD a little over 18 months ago, with his battle against the condition prompting the awareness and fund-raising campaign.
Lee and Mason will travel 544km of the Murray River by tinny starting next Monday, October 7, as part of the Making Waves for PCD event, with the aim to raise vital awareness and funds for the newly formed PCD Foundation, and two local families battling the disease.
They will travel at an average speed of 30km/h across the week-long voyage from Swan Hill to Mildura, covering an average 90 kilometres a day, and are expected to arrive back at the Gol Gol Hotel on Saturday, October 12.
Lee said stops were planned in a number of towns along the way, including Tooleybuc, Boundary Bend, Nangiloc and Euston, before hosting a major fund-raising event at the Gol Gol Hotel on October 12.
“The more we can do now to make people aware of this condition, the better,” he said. “It will mean that more people, and even GPs, can be more aware and more sensitive to the condition.
“We will also be hosting an event in Swan Hill on the Sunday before we leave, and we’ve invited a number of local health professionals along to hear our story, learn how we’ve come to get Mason diagnosed with PCD, and then field questions.
“We will be doing similar things along the way, including hosting a night at the Euston Club where we will meet with local health professionals and representatives from Mallee District Aboriginal Services on Wednesday, October 9.
“We then have a massive night planned on October 12 from 5pm at the Gol Gol Hotel. We have 110 tickets available, with the night to include auctions, raffles, live entertainment and kids entertainment, with 50 percent of the money raised to go to the PCD Foundation, and the other 50 percent to be split between two local families affected by the disease.”
PCD Foundation president, Catherine Kruljac, will also speak at the October 12 event.
Lee said that thanks to the support of local businesses and organisations, a number of “high quality items” had been secured for the auction.
This includes a signed 2019 Hawthorn squad jumper, a framed photo of Richmond’s 2017 premiership team, a signed guitar donated by Noiseworks lead singer Jon Stevens, and a $500 voucher from the Euston Club, just to name a few.
“We really can’t thank the community enough for their support,” Lee said. “We hit up something like 145 businesses, and just about every one of them has come on board.”
Tickets are still available for the October 12 event, and are available from the Gol Gol Hotel, Collie and Tierney or Bev Marks.
More information is also available on the Making Waves for PCD Facebook page.