SIMONE Johns wants her daughter Marley to be treated the same as any other 16-month-old.
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Born with an extremely rare and incurable medical condition known as Klippel-Trenaunay Syndrome, Marley’s right arm and chest have a “port wine stain” caused by bundles of tiny blood vessels near the surface of her skin that resemble blue bruising.
Along with being the cause of Marley’s large birthmark, the condition also causes her arm to swell to twice its size, often leading her to wear a compression suit to reduce the swelling.
The condition affects about one in every 100,000 people. But on a trip to Southbank Beach in Brisbane earlier this month, Ms Johns’s partner noticed people were outwardly staring at Marley and whispering about her skin marks.
“My partner brought it to my attention and I looked up to see there was a family nearby staring at us,” Ms Johns said.
“My partner was extremely upset by the dirty looks people were giving us and it started to bother me too. It was like they were assuming the worst, that Marley had been physically hurt in some way.”
It deeply affected the former Ballarat woman, who now lives in Brisbane.
She shared an emotional post on Facebook outlining the incident, with a photograph of Marley in her bathing suit.
In less than a week the post was shared almost 100,000 times across the world.
“To me Marley is the most beautiful, happy and cheeky child,” Ms Johns said. “But like every parent, I worry about how she will cope with this type of attention.”
This month Ms Johns formed the KTS/PWS Mother’s Group Australia group on Facebook.
To join the group, visit on.fb.me/1vAXvV9
melissa.cunningham@fairfaxmedia.com.au