NY Daily News – October 09, 2014
by Meredith Engel
It’s the most epic stair climb since Rocky Balboa’s. New York’s Bravest will help dozens of girls who suffer from Rett syndrome climb up Manhattan’s landmarked Tweed Courthouse steps Saturday to raise awareness for the devastating disorder.
“As firemen we help people, no matter the situation,” said Kenny Lynch, a Queens firefighter whose daughter suffers from Rett. “That’s what we do.”
The rare neurological condition causes limited speech and use of the hands and feet.
It affects one in 10,000 children, who are mostly girls, said Dr. Aleksandra Djukic, a director of The Tri-State Rett Syndrome Center at The Children’s Hospital at Montefiore.
People with Rett syndrome are born healthy and only show symptoms — like delays in speech, growth, standing and eating — after about one year.
“It is a human tragedy being trapped, not being able to express yourself,” said Djukic, who helps organize the annual event.
“They cannot talk, (but) it does not mean they have nothing to say.”
Firefighters throughout the city will lead about 60 girls up the historic courthouse’s 30 steps to keep up the three-year-old tradition and increase funding for research.
“Climbing stairs is a symbolic gesture because climbing takes you upward and forward even if it is difficult,” Djukic said.
One of the brave girls making the triumphant climb is Ysolde Stienon, 19, of Brooklyn, who was diagnosed with Rett syndrome when she was 4.
After the diagnosis, her father Christopher and mother Constance researched the condition on the Internet and were distraught with what they saw.
The life expectancy given was 18 years, if Ysolde was lucky.
“Online, the description was very depressing and hopeless sounding, yet we could see in our daughter she had so much life and positive energy,” Christopher said.
“We couldn’t believe that’d be the long-term prognosis.”
But the devoted parents didn’t give up — and their daughter has beat the odds.
Ysolde is a normal teenage girl who loves listening to music, watching movies, traveling and being social.
Educators come to her house to teach her reading and writing. Though she is nonverbal, Ysolde uses a computer to communicate.
And there’s major hope for Ysolde and patients like her.
Medications that reverse Rett syndrome are in human trials after they were proven to work in mice.
“I do believe before I retire we will have effective treatments for Rett,” Djukic said.
Saturday’s stair climb, which takes place during Rett Syndrome Awareness Month, is a way for Ysolde and her family to show the world they can do “much more than what’s expected of them,” Christopher said.
Ysolde, who one day hopes to climb to the top of the Eiffel Tower, was the inspiration behind the powerful movement.
The climb gives the teen and other Rett syndrome patients autonomy, Constance said.
“(It’s a way for them to say), ‘We are not somebody first,’ ” she said.