Sept 2019 Wicked Local
Wheaton College President Dennis Hanno surprised Jessica Chaikof during her graduation this year when he not only granted her a diploma, but gave her guide dog Jigg one as well.
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.
After Rachel’s pediatrician sent her for a hearing test at 2 months old, the results were devastating, said Chaikof. “We were shocked and confused” when Rachel was diagnosed with profound hearing loss. Chaikof said she and her husband “went home and cried for 24 hours.” By 1989, Rachel was part of the FDA clinical trials into cochlear implants and was one of the first 200 children in the country to receive them at that time, said Melissa Chaikof. “They turned it on, she startled and started to cry,” recalled Melissa Chaikof. “We were thrilled because it was obvious that she was hearing.”
Almost four years later, Rachel’s brother, Adam was born and had no hearing problems. However, four more years later when Jessica was born, she did not respond to auditory stimuli. Like Rachel, Jessica wears a cochlear implant. Making matters worse, in addition to deafness at birth or worsening hearing loss, the “genetic condition [is] characterised by ... progressive vision loss,” according to the Usher 1F Collaborative. Now the sisters have both been diagnosed with retinitis pigmentosa, a disease of the eyes that is a symptom of Usher Syndrome Type 1F.
“My big dream after I get cured is to take driver’s ed and get a car in the colour I’ve always wanted – blue,” said Jessica, 24. However, she was frank about the difficulties of living with Usher 1f and retinitis pigmentosa. “It’s really frustrating ... the lack of independence I feel sometimes,” she said.
Both she and Rachel had a relatively late-onset diagnosis of retinitis pigmentosa. “It’s a very gradual vision loss,” said Melissa Chaikof. When she was diagnosed at age 19 during a routine annual eye exam, Rachel recalled she “was incredibly distraught.” Right now her vision is good during the daytime, but, “I really struggle to see at night,” she said.
Jessica co-founded the first disability club at Wheaton. While she is interning this year, her plan is to go into a PhD program that concentrates in organisational sociology or medical sociology where “you really focus on accessibility and disability issues.”
Rachel volunteered with the Peace Corps in Cameroon from 2014-2016 and now works in international development in Washington, D.C., where she lives with her husband. “Today I’m feeling way more hopeful,” because of the work her parents have done with the foundation, said Rachel. “They’ve moved mountains ... to do everything they can to save mine and my sister’s vision.”
After Usher Syndrome Type 1F was discovered in 2002, Melissa Chaikof went to a conference focusing on the status of research into a cure. At the time there wasn’t much being done. “If we don’t do something nobody will,” said Chaikof. “I don’t want our girls left out.” The nonprofit was founded by the Chaikof family, incorporated in 2013, and received its nonprofit status in 2014.
Its purpose is to fund medical research and raise awareness of the disease which often impacts Ashkenazi (Eastern European) Jews. The organisation now funds several research labs that are working on a cure. Since 2014 the nonprofit have given out more than $1.8 million in grants for research. Asked if she felt progress would be made on the disease, Melissa said she felt “excited, hopeful [and] always a little anxious because we’re in a race against time.”