Newton parents ‘move mountains’ in fight against rare disease
Melissa Chaikof first observed a problem with her older daughter Rachel’s hearing after a door slammed.
“I noticed she didn’t startle,” the Newton resident recalled of her newborn.
The rare genetic disorder affecting Rachel, now 32, and her sister Jessica, 24 – Usher Syndrome Type 1F – wasn’t identified until 2002. By 2014, Melissa Chaikof and her husband, Dr. Elliot Chaikof, created a nonprofit foundation to raise awareness and fund research to fight the devastating disease that can also rob patients of their sight. The organization’s next fundraiser will take place Oct. 13.
After Rachel’s pediatrician sent her for a hearing test at 2 months old, the results were devastating, said Chaikof…..