Coworkers have separate children battling same rare syndrome

It is a coincidence that defies all odds – a pair of coworkers each have a child who is battling a rare disease – a disease where only 200 people have been diagnosed worldwide.

News 12 Staff

Sep 1, 2022, 11:30 PM

Updated 651 days ago

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It is a coincidence that defies all odds – a pair of coworkers each have a child who is battling a rare disease – a disease where only 200 people have been diagnosed worldwide.
Bosko Kacarevic and Alyssa McCullion work for Verizon, and both live in New Jersey. Each of their children has Malan syndrome. The illness is an overgrowth disorder found in infancy and childhood. The illness is a de novo mutation, meaning that neither parent has to carry it.
Kacarevic’s daughter Sophia was diagnosed with the syndrome at the age of 14. McCullion’s daughter Nora was 13 months.
“We were always concerned about her development… When she was 6 months old, her head growth had gone from 50% percentile to 90%,” McCullion says.
The main symptoms of Malan syndrome to look out for are an oversized head, tall stature, low muscle tone, scoliosis and cognitive disability. Both girls have these symptoms.
“It's new. There's been tons of research since it was discovered, I think maybe 10 years ago. But there's still things we don't know about it,” McCullion says.
She says that when her daughter was first diagnosed, it was overwhelming. She says there was one thing that did help.
“Getting plugged into the community. That’s the first thing we did,” she says.
“Nobody understands quite what you're going through unless you meet someone going through the exact same thing,” Kacarevic says.
McCullion says it was nice to be able to see someone like Sophia, who is older, to see what is ahead for her own daughter.
The Malan Syndrome Foundation is made up of only a few families affected. They say they plan to continue to push for research and awareness.
There is no cure for the illness.
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