OMRF discovery ignites search for patients with skeletal disorder

Published: Wednesday, December 16, 2020 By: Journal Record Staff Source: The Journal Record
genetic diseases, Xia said, the need for therapies is especially profound.

“These patients will live with their conditions for life,” he said.

Still pint-sized at 3 feet, 6 inches tall, Madison, now 8 and a second grader at Anderson Elementary in the Tulsa Union district, gets an infusion every six months to help with her bone density and has reduced her tube feedings. She’s stronger, thanks to physical therapy, and has more energy.

Although it was different not to see their extended family for Thanksgiving because of the pandemic, Madison said there was a bright side: She got to decorate the whole house for Christmas. Now she just needs to sort out the logistics of leaving milk and cookies for Santa (and Chex Mix for the reindeer – their favorite, she says) in a world with COVID-19.

“There’s no way we can leave them on the roof!” Madison laughed. “But maybe we can leave them outside. Santa could just drop the presents down the chimney.”

And if Santa comes through on a new baby doll for Madison after all? It will have a wardrobe ready, her mother said. The Bitty Baby that already gets tucked into bed with Madison each night is the perfect size for Madison’s preemie clothes.

This story originally ran on the 

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