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PENINSULA NEWS – ROLLING HILLS ESTATES MOM SEEKS CURE FOR 6-YEAR-OLD WITH RARE DISORDER THAT AFFLICTS JUST 1 IN 65 IN THE WORLD

Article By Bradley Bermont

The first sign of trouble was her newborn’s faint cry.

“In my mind, I’m thinking that’s not a big deal,” said Damaris Bailey of Rolling Hills Estates, recalling the moments after her daughter Lulu was born. “Maybe she’s not a crier, you know?”

The nurse checked Lulu’s vitals and noticed her blood sugar was low. When they took her to the nursery, Lulu started having what looked like seizures. The doctors suspected meningitis, but the test results were clean. Then, they started to notice slight physical abnormalities — her chin was a little small; her nipples were further apart than normal; her muscles were underdeveloped.

After two days of tests, the doctors didn’t have any answers. Bailey was nervous, but the pregnancy had been normal. The delivery had been fine. It was her second child and she couldn’t think of anything that felt different this time around, but something, somehow had gone awry.

The doctors ran an ultrasound on Lulu’s head and discovered she was missing her corpus callosum — the part of the brain that connects the left and the right hemispheres — but they still didn’t know what caused it.

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The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.