Mother’s struggle with FSH inspires company to make a charitable donation this holiday season.
Over the holidays, we received a generous $10,000 donation from Adveq, a leading asset manager investing in private equity and real asset funds globally. FSH Society was provided this gift after Adveq witnessed the courage of one of their employees, Angela Farkas, in sharing her story and her struggle with FSHD. We want to share her story with you, too:
Angela Farkas was raised in New York’s Rockland County by two deaf parents. A successful businesswoman and mother of two – Vanessa, five and Alyssa, eight – she currently works in Adveq’s New York City office and lives in Westchester, New York with her husband.
When Alyssa was born in 2005, she failed the infant hearing screening. As the daughter of two deaf parents, Angela was not entirely surprised. But when Alyssa did not smile during her first few months of life, Angela and her husband became concerned. Several specialists told them that there was nothing to worry about, and it wasn’t until Alyssa was three years old that a neurologist diagnosed her with facial paralysis. Angela and her husband were told there was nothing they could do – which was devastating.
Alyssa was four years old when Angela discovered a news article regarding a girl in Florida who had successfully undergone facial paralysis surgery. Angela tracked down a doctor in NYC who agreed to perform the same procedure when Alyssa turned five. After determining Alyssa did not need additional evaluations before undergoing the procedure, the surgeon decided to move forward with the surgery several months later. The first surgery, on the right side of her face, took twelve hours but seemed to go off without a hitch. Alyssa recovered quickly and after three months, Angela saw her daughter smile for the first time.
In January of 2011, Alyssa had surgery on the left side of her face to complete the process, and unfortunately there were massive complications. The five year old girl’s lung collapsed and she was put into a medically induced coma. Alyssa emerged from the coma and recovered over a period of several weeks, but Angela began to notice a decline in Alyssa. “Her smile began to fade and her whole body seemed weaker,” said Angela. “The surgeon suggested that we see a neurologist.”
Meanwhile, Angela’s sister-in-law was deeply enmeshed in research on Alyssa’s symptoms and stumbled across the FSH Society. “When I read the website, I knew immediately that this was what Alyssa had – it was textbook,” said Angela. “I took her to four different neurologists from four different hospitals, and they all thought it was FSHD.”
Vanessa, Angela’s younger daughter, is now five. Though she suffers from hearing loss, she is still physically active and shows minimal symptoms. Angela, as a very fit and active person, shows no symptoms – you would never suspect that she carries the FSH gene. Sadly, Alyssa has declined dramatically since the surgery.
“Before the surgery, Alyssa was normal and active, and now we’re in the process of getting her a wheelchair,” said Angela, who has become a very involved member of the FSH Society.
This year for the holidays, the Adveq leadership team decided to make a gift of $10,000 to a charity of the employees’ choosing. Angela nominated the FSH Society and when the votes came in – from offices around the world – the FSH Society was the clear winner.
“I’m honored and humbled that my coworkers chose the FSH Society,” said Angela. “There is no other way to describe it.”