When Chandler O’Leary was born, a brain hemorrhage threatened his life.
At first, doctors told his parents he wouldn’t make it. When he did pull through he was left with lingering side effects. He still has some weakness in the left side of his body, and he doesn’t have any left peripheral vision. Sometimes his joints just give out as he walks.
At the time, his parents didn’t know the exact cause, but it may have been from Ehlers-Danlos syndrome, a rare genetic disorder that weakens collagen (a key protein) in the body.
That diagnosis, however, didn’t happen right away.
It was around the time Chandler turned five that his parents noticed he was unusually flexible and got bruises through only minor bumps. A pediatrician suspected it was Ehlers-Danlos, a hunch that was confirmed through a DNA test.
“It was really scary,” said his mother, Amanda. “We just knew a few certain things, like we have to be even more careful with him.”
Amanda also tested positive for the syndrome, identifying culprit for her clumsy childhood. Like Chandler, she was easily bruised and injured, and co-ordination was a challenge. “I have memories of gym teachers always giving me a hard time, like, ‘why can’t you get this right?’” She calls Ehlers-Danlos an invisible disability. At least with Chandler, now 10, his classmates and teachers will know why he struggles, she said.
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