Families Affected By Fetal Alcohol Syndrome Hope Study Increases Awareness, Treatment For ‘Invisible’ Disease

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By Kate Thayer

Original Source: chicagotribune.com

Six-year-old Macy runs throughout her Naperville home, toting her plush Hatchimal toy. In her basement play room, she dangles from the monkey bar rings her dad affixed to the ceiling and then turns to her art supplies. Minutes later, she’s dressing in costumes — first a parrot, then a veterinarian.

When she was a toddler, Macy’s nickname was “the energizer bunny,” said her mom, Erica Okrzesik, because “she was always on the go.”

Today, Macy, whom the Okrzesiks adopted as an infant, seems like a typical, lively first-grader. But she has what her parents call an “invisible” affliction. Last year, Macy was diagnosed with fetal alcohol spectrum disorder, or FASD, which she acquired after her birth mother drank alcohol during pregnancy, Okrzesik said.

“We were just in utter shock and disbelief,” she said. “It’s hellish. It’s really difficult. It’s just an ugly disease.”

The Okrzesiks say there are few services available to them, despite the disability’s potential to severely impair those who have it.

The parents and others whose children struggle with the disorder say they hope new research published this month in the Journal of the American Medical Association leads to increased awareness, more services, improved diagnostic methods and ultimately…click here to continue reading

 

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