Woman With Special Needs Defies Odds With Each Birthday

Ron and Sara Hayes’ daughter spent nearly two weeks in the hospital after she was born. News 9's Karl Torp has more on how a woman with a rare disease continues to defy the odds.

Friday, June 19th 2020, 5:23 pm

By: Karl Torp


Ron and Sara Hayes’ daughter spent nearly two weeks in the hospital after she was born.

“When Megan was born, she immediately went to the NICU. I didn't get to see her at all until the next day. and that was looking through the window,” said Sara.

Tests revealed a crushing diagnosis, a rare genetic disorder.

“Called us back in and said she's got trisomy 18 and said just take her home she will probably die within 4 months,” recalled Sara.

“Each day you are wondering what's going to trigger this? What's going to cause her to die?” said Ron.

But Megan was born with a healthy heart, a rarity among those with Trisomy 18.

Long after doctors thought she'd pass; she continues to thrive.

“I think when she lost her first tooth I almost cried,” recalled Sara.

“It’s a delight, It’s a delight. She wakes up every morning happy, smile on her face,” said Ron.

New 9 watched as dad got Megan to laugh over and over again.

“She’s eager to please,” said Sara.

The Hayes’ now serve as an inspiration to other trisomy 18 families who have contacted them from around the world.

The Hayes’ are the Oklahoma Chapter Co-Chairs for the Support Organization For Trisomy, or SOFT.

“It’s not a death sentence for having a child like this,” said Ron

“These kids really are living, and they are doing these things,” said Sara.

Megan likes when mom reads her books, watches sports with dad, and goes to church on Sundays.

She even graduated from high school.

“We don't have to worry about her being in a car accident or taking any drugs or anything like this,” added Ron.

Last month, the girl given four months to live turned 40 years old.

She is the oldest known person with trisomy 18 in the country and second oldest in the world.

“The doctors don't know what to tell us,” said Sara.

Which is just fine for the Hayes’, who’ve learned surprises are the best part of their daughter’s unexpected life.

“She’s a miracle, I don’t know how else to explain it,” said Sara.


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