CDG strong: The Dann and Sait families are devoted to raising awareness for CDG. Pictured (l-r) is Isaiah Dann, three months, Amy Dann, Michael Dann, Louis Dann, 3, Amelia, 3, Joshua Sait, Carly Sait, and Matilda Sait, 8 months.
Photo by
Megan Fisher
They may have been rained out, but Shepparton residents Michael Dann and Joshua Sait still managed to raise over $13,000 for a rare medical condition called congenital disorder of glycosylation.
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Also known as CDG, the genetic condition is caused by the body’s inability to attach sugars to other molecules such as proteins and lipids that are essential for function.
It leads to a wide variety of symptoms that mainly affect the brain and spine, such as seizures and hypotonia (loss of muscle tone).
And three-year-old Louis Dann is one of the few in Australia, and in the world, affected by it.
“We were living in Canberra at the time he started having seizures, but we didn’t know they were seizures at the time,” Mr Dann said.
After 10 weeks at the Sydney Children’s Hospital in Sydney, the Dann family was sent home with a diagnosis.
“They sent us home and told us to enjoy the time that we had,” Mr Dann said.
“They told us you might get Christmas with him — and this year will be three Christmases with him.”
Since then, Mr Dann and friend Mr Sait, supported by their partners, Amy and Carly, have embarked on an annual fundraiser for research into the rare condition.
Two years ago, the pair took part in the Gold Coast Marathon and raised over $14,000.
Last year they organised a small fun run and wine drive to raise an additional $6000.
The two admit they probably bit off a bit more than they could chew with this year’s ‘Everesting’ event — climbing a mountain as many times as it takes to reach the elevation of Mount Everest: 8850m.
“It was definitely harder than we anticipated, we definitely went into it a bit naive,” Mr Sait said.
They embarked on their mission at Mt Porepunkah, near Bright.
The peak is about 1100m above sea level, so to ‘climb Everest’ would have taken just over eight trips up the mountain and around 22 hours.
Mr Dann managed to reach 5500m elevation gain, and Mr Sait climbed 6500m.
But while their journey up the hill fell short, not helped by wet weather, their fundraising did not.
Ms Dann said they were “so proud” of the effort Mr Dann and Mr Sait put into raising awareness for CDG.
“Carly and I both knew that once they put their minds to do this they were going to make it happen,” she said.
“We’re just so proud of the effort, not just the ‘Everesting’ and the physical effort that they’ve done but all the work that they’ve put into raising the awareness and the funds.”
The funds raised will be donated to CDG CARE, an organisation that promotes greater awareness and understanding of the rare condition.
Attempting Everest: Michael Dann and Joshua Sait fell just short of climbing 8850m (the height of Mount Everest) at Mt Porepunkah on the weekend.
Photo by
Megan Fisher
