Mother Fights to Treat Her Family’s Rare Disorder

Author: The Altamont Enterprise Hilltowns
Published On: 02/18/2020

arlier this month, Hilltown native and Berne-Knox-Westerlo ’99 grad Chantelle Nobis went to Washington, D.C. to fight for funding that will help develop treatments — and maybe a cure — for a group of rare nervous-system disorders that afflict both her daughter and husband. Nobis and her family now live near Rome, New York. 

Neurofibromatosis refers to a cluster of disorders — neurofibromatosis type 1, type 2, and schwannomatosis — that are genetically distinct but which all cause tumors to grow along the nervous system. The tumors tend to be noncancerous but require constant attention and can disrupt the body by pressing on nerves and organs. Blindness and hearing loss are common side effects.

Nobis’s husband, Peter, a mechanic, developed NF2 through a random genetic mutation and has suffered paralysis on the right side of his face; a tumor on the main nerve connecting his inner ear and brain, which was removed with radiosurgery; and currently has tumors on the back of his brain that are being watched, Nobis said. 

NF2 develops in about one person out of every 25,000.

Their daughter, Amelia, now 8 years old, was diagnosed with NF2 when she was 4. Hers is a more aggressive variation of NF2 than what her father has. 

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