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Schnizel Giedeon Syndrome

 Schinzel–Giedion syndrome is a congenital neurodegenerative terminal syndrome. First described in 1978 by Dr. Albert Schinzel (1944- )and Dr. Andreas Giedion (1925- )[1][2] as a syndrome with severe midface retraction, skull anomalies, renal anomalies (hydronephrosis) and other anomalies. Babies born with Schinzel–Giedion syndrome have severe mental retardation, growth retardation (unless fed through a feeding tube) and global developmental delay

Following doctor’s orders, Brian and Damaris Higuera drove home to let their baby die.

Not quite nine months old, Sadie had already endured a lifetime of medical treatments. Due to a rare genetic disorder, Schnizel Giedeon Syndrome, one of her kidneys malfunctioned, her intestines were displaced and her brain lacked the nerve fibers linking the two hemispheres.

Copyright © 2018, The San Diego Union-Tribune–Giedion_syndrome


“About 10 minutes later, her arms stopped twitching — and then she started focusing on me,” Brian Higuera said. “I wondered: could this actually be happening or am I just wanting it to work?”

When Damaris Higuera came home, she rushed to her baby’s side.

“Sadie,” she said, “how are you?”

Then the baby did something unusual: she looked directly at her mother.

“We got our baby back!” Damaris said, crying. “We got our baby back!”

For the Higueras, the past year has been especially happy. Sadie spent all 12 months at home, without a single trip to the hospital.

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