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Kansas baby born with rare form of dwarfism defies odds, inspires thousands

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Posted at 5:01 PM, Dec 06, 2022
and last updated 2022-12-06 19:25:54-05

KANSAS CITY, Mo. — A two-year-old girl from Hutchinson, Kansas, is inspiring people across the globe with her story.

Nora Ramey was born with a genetic disorder called rhizomelic chondrodysplasia punctata, or RCDP, a rare form of fatalistic dwarfism.

“It is what they call an autosomal recessive trait," said Nakeyah Stewart, Nora's mother. "So basically, that’s just kind of a really fancy way of saying that dad and I both carry a strange, random gene mutation in the same gene, and that both of us passed that mutated copy onto her."

Stewart found out during her 27th week of pregnancy that her daughter has RCDP.

She had never heard of the disorder and was terrified, as many babies born with the mutation do not survive the stage of infancy.

But Stewart says her daughter came into this world just the way she was supposed to.

Although Ramey is small, she is mighty, and she continues to defy odds everyday. The family just celebrated her second birthday in November.

“We were gonna love her as long as she was here. Whether that was five minutes or 50 years — it didn’t matter. She was ours and we were gonna love her the way that she was,” Stewart said. “I had a conversation with her and I just told her, you know, if you fight and you stay with me, then I will be the fiercest force of nature you have ever met at your side.”

And fight they did.

Stewart initially launched a Facebook page called “Nora’s Journey” to document her progress and update their friends and family.

Now, the platform has nearly 7,000 followers who come to support her.

Stewart’s hope for the page is that it would reach another family like theirs. S

he knows all too well that carrying the burden is easier in community with love, and says perhaps more awareness and research can lead to a cure for “Rhizokids.”

“Just because these kids are the few does not mean that they don’t deserve to have viable treatment options and, you know, something that gives them a better quality of life,” Stewart said.