By Callum Ludwig
The latest edition of the Eastern 80 is coming up, with all welcome to join the ride and raise money for the Royal Children’s Hospital.
Two local girls and close friends, Ruby and Ella, who know the hospital well are the ambassadors for this year’s event, having been diagnosed with very rare conditions that required the specialist care of the hospital staff.
Ella’s mum Rebecca Cochrane said Ella had her first anaphylactic reaction when she was about 18 months old.
“When we were in lockdown, she developed an autoimmune problem where she had inflammation of the blood vessels which came up in a painful sore rash all over her body,”
“About two years ago Ella became repeatedly unwell for weeks at a time with high fevers and bedridden with headaches, and it was quite debilitating, so we went back to the children’s hospital because the GPs were a bit baffled as to what was going on,”
“She’s since been diagnosed with an autoimmune-related kidney disease and unfortunately for Ella there’s no cure for the issues that she has going on but they’ve trialled her response to some medication and luckily that’s been working really well.”
After years of testing and uncertainty, Ella was eventually diagnosed with IgA Nephropathy, commonly known as Berger disease, where clumps of antibodies are deposited in your kidneys, causing inflammation and kidney damage to the point where the kidneys can leak blood and protein into the urine.
Ms Cochrane said the hospital was wonderful with the way in which Ella’s symptoms presented, because often by the time they got into the hospital, Ella appeared well again.
“I was always worried when we’d go down there that they wouldn’t understand why we were so concerned, but the staff were amazing,”
“They’ve always been amazing and reassuring to both myself and Ella, especially at Ella’s age, and they always explain things to Ella as well as myself to make her feel like she’s definitely acknowledged as a person and the young adult that she’s becoming,”
“It’s great (to support the Eastern80) because so many people have been touched by the hospital. When Norm (Eastern 80 organiser) asked if Ella would be interested in being an ambassador, she didn’t hesitate at all. She’s very excited to be involved in something locally to support the hospital.”
2024’s event will be the ninth edition of the Eastern 80 since it was founded by Norm Orr to bolster Warburton’s fundraising efforts for the Good Friday Appeal and they are hoping to raise a bit over $10,000 this year in order to surpass a total of $90,000 donated and to aim for the magical $100,000 in 2025.
Ruby’s mum Fiona Kirwan said when she was born in 2009, at eight days old her newborn screening test came back positive for a very rare genetic condition called Maple Syrup Urine Disease (MSUD).
“Straight away she was admitted to the Royal Children’s and put into ICU for two weeks to filter the toxins from her blood so we stayed on site for two weeks until she was well enough to come home,” she said.
“They’ve got a very strong metabolic team who became our second family, there were about 10 team members we were able to speak to whenever we needed reassurance,”
“We still deal with them now, we send in urine screening cards probably twice a month just to check her protein level, she’s on a very low protein diet and we’re in direct contact with them to let us know what her levels are like and whether her diet needs to be adjusted.”
Ruby was the first baby to be diagnosed with MSUD in Victoria for 16 years at the time.
Ms Kirwan said they still have clinic appointments twice a year and if left untreated, Ruby would die so the hospital remains very important to them.
“I wasn’t aware of the Eastern 80 until recently when we were contacted recently and we were definitely happy to be a part of it,” she said.
“We owe a lot to the Royal Children’s and to get some awareness out there of what they can do for families and kids like Ruby is just fantastic.”
This year’s Eastern 80 will be held on Saturday 17 February, setting off from the COG Cafe & Bike Shop at 42 Station Road, Warburton at 7.30am. Participants can ride the full 80km, ride 50km or walk 9km.
To register, visit trybooking.com/events/landing/1141935.
