Escobar Syndrome
When I say that Julia’s experience with Dr. Feldman and the Paley Institute was “life altering,” I mean it in the most literal sense possible. My daughter is almost 13 years old and was born with Escobar Syndrome and Arthrogryposis. Her legs have always been in the “froggy squat” position and she has stood about 22 inches tall most of her life.
Without a functional walk, she has gotten around by hopping or being carried. After having undergone dozens of surgeries in her young life and being told that “fixing” her legs would be impossible, she was put through a very severe surgery that ended up harming her more than it helped.
When I happened across a Facebook post about Dr. Feldman, I threw caution to the wind and sent him a private message, never really expecting a response. I was wrong. Within a tremendously short amount of time, Dr. Feldman called me, told me to get Julia out of the surgically placed hardware that had been put into her body (which was harming her) and get her down to West Palm Beach, FL to see him ASAP.
Thus began our months long journey from NY to FL. My daughter is a tiny but fierce warrior. With the help and support of so many at the Paley Institute and with the compassion of Dr. Feldman (as he reached out to a stranger who sent him a message), Julia now has straight legs and can walk! She is now roughly 3 feet tall and her walk improves everyday.
From Dr. Feldman to the therapists and from the office staff to the volunteers at the Quantum house, my deepest and most heartfelt thanks for changing our lives and helping Julia realize her dream to walk.
Her journey has by no means been easy, but she will tell you, it has by ALL means, been worth it!
Jill
Julia’s Mom
