Molly's Kids: Shelby toddler has no real syndrome, but lots of d - | WBTV Charlotte

Molly's Kids: Shelby toddler has no real syndrome, but lots of diagnoses


Meet 3-year-old Piper, from Shelby. Her mom says even on bad days, she's smiling.

Mom Sarah reached out to say that Piper (I love that name) has a lot of things going on… and not all the diagnoses fit nicely into one syndrome.

Could we still feature her as one of our amazing #MollysKids? Say no more. Of course.

“Her prognosis is unknown at this time,” said Sarah White. “Hydrocephalus. Septo-optic dysplasia. Genesis of the corpus collision – which means she’s missing the bundle of nerves separating the left and right side of her brain. Also, hypotonia. Low muscle tone. Seizures. She even has a Partial Trisomy 17.”

What’s Partial Trisomy 17?

“A really rare genetic disorder,” Sarah said. “She is the first and only person to my knowledge who has been diagnosed with a 17q22.2 duplication.”

Because of THAT, Sarah says she has been warned since Piper's birth that her daughter may not hit milestones, but so far, Piper is walking, talking, singing, dancing and doing well.

“She is the sweetest, brightest light,” Sarah said. “The bravest little girl I know.”

Piper has two 12-year-old sisters and a 9-year-old brother.

There was another boy in the family as well. He was the baby, says Sarah, a year younger than Piper. Sadly, he died at 6-hours old due to a heart condition.

“There are lots of things going on,” she said. “But we are family and we love each other. Piper inspires us all.”

You can find out more on Piper here on her Facebook page.

We’re thrilled to meet you, Piper. Thanks to your mom for wanting us to know about your beautiful life.

Editor’s note: This story is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there – which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story (and updates on all #MollysKids) here

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