REGULAR readers of the Mildura Weekly will be familiar with young Mason Hayes and the annual fund raising activities that are held to raise awareness of support of the rare condition PCD − Primary Ciliary Dyskinesia which Mason was diagnosed with in 2018.
PCD is so very rare − only 45 children in Victoria have the disease − and two of those live in Mildura and it was only after endless tests and hospital visits, that Mason’s diagnosis was confirmed.
At the end of this October Mason, 6, and his sister Ava will ride their bikes 55 kilometres, 10 kilometres further than last year’s ride which was 44 kilometres.
Why 44 km? That’s because there were 44 genes known to PCD, and he then finished his ride with his best mates, family and friends who completed the ride from the Buronga wetlands to the Gol Gol park and it was an amazing success and they raised $3600!
This year the ride will be 55 kilometres as there have now been more genes found with PCD making it 55. Mason’s goal this year is to raise $5096.
Mason’s parents, Julie and Lee Hayes said that it was important to raise awareness and much needed funds for PCD Australia.
“It is an amazing organisation who work with lead specialists in Australia to raise awareness for PCD and publish guidelines for patient care,” Julie said.
“Money raised goes toward the purchase of equipment such as nebulisers and physio equipment to help care for the two children in Sunraysia with PCD also purchasing these items for children all over Australia.”
“Our Mason is lucky to have been diagnosed at three years of age, as the average age of diagnosis in Victoria is 18 years old − which is a long time to live with a potentially life-threatening disease without diagnosis,” Lee added.
Due to COVID and the recent restrictions on both sides of the boarder Julie and her team have come up with an online challenge.
People are asked to please visit www.pcdaustrlia.com.au to register and donate or you can email Julie directly to register locally.
Julie said if restrictions lift by the end of October, the family plan to do the ride from Buronga Wetlands to Gol Gol on Sunday, October 31, commencing at 11am.
Donating raffle prizes: Anything big or small would be much appreciated and will be raffled off on the day.
Organisers would welcome those as soon as possible particularly from business so they can promote their support.
Sponsorship: The group is looking for sponsors to help Mason reach his goal.
Gold: $250 − Gold sponsors will be mentioned and placed on their Facebook page: makingwavesforpcd or email Julie at firstname.lastname@example.org or mobile 0400 672 499
To donate: Bank details: BSB: 633-000 A/C# 168595940: A/C name: PCD Australia