It's a condition so rare there are no Australian fundraisers for it, yet it's a condition three of Holley Jones’ direct family members live with.
Mrs Jones, 25, looks after her husband, Bradley, and two sons Hunter, 4, and Issac, 1, who all have vascular Ehlers-Danlos syndrome — a connective tissue disorder which makes all tissues, arteries and internal organs extremely fragile.
The life-threatening disorder can result in sudden arterial or organ rupture, stroke and haematoma, and is estimated to affect only one in 90,000 people.
A few weeks ago Mrs Jones was sitting at home with her mother — "sewing guru" Lisa Forbes — when Mrs Forbes had an idea.
“Mum suggested we make more masks for a charity, and it just exploded.
“We started with 20, but lost count at over 300 masks.
“We've raised $1500 for Annabelle's Challenge in the UK, which is the only charity there is for VEDS.”
Working 48 hours over a week, sometimes until 1 am, the mask making project involved Mrs Jones’ whole family including her father Sean Forbes, who chipped in by fixing the sewing machines, and her sons Hunter and Isaac, who did their best to help with the sewing.
In a bid to keep it local, Mrs Jones said she bought materials from Catharina's Vintage Stitches in Kyabram.
She also received an anonymous $150 donation for fabric to create the cheerful three-layered masks.
“All the money that was raised went straight to Annabelle's Challenge, we made no profit,” Mrs Jones said.
“People who knew Bradley's story and other people who saw the fundraiser on Facebook started buying them, and yesterday we had to say `no more orders’ because we need a break.”
Mrs Jones met Bradley at Hurley's Bar in Kyabram when she was 18, and instantly took a liking to him.
Mrs Jones said afterwards she did some investigative Facebook "stalking" which ultimately led to them getting married last year.
But about two years ago, Mrs Jones said Bradley's health went downhill.
“About two years ago Bradley was having symptoms similar to a heart attack, he couldn’t lift his arms, he couldn’t speak and he couldn’t talk,” she said.
“He was holding his chest saying ‘I’ve got pain’ — and from there it kept happening every six weeks.
“The hospital said they couldn’t figure it out, so eventually St Vincent's sent him for genetic testing and one year later he found out he had the vascular version of EDS, which is the worst one you can get.”
Mrs Jones gave up her job in early childhood care to look after her husband full time.
And now, she's recently enrolled in a Bachelor of Educational Studies at La Trobe University to fulfill her dream of becoming a primary school teacher.
“Life sends you challenges and you have to take what’s given,” she said.
Mrs Jones said she would consider making more masks in a few weeks’ time.
● For more information about VEDS and to donate visit www.annabelleschallenge.org
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