Our story began in July 2019 when we brought home the most beautiful, spunky, smart daughter who would just be turning eight years old! She was born with a rare "superpower" called Larsen Syndrome. She had undergone eight other surgeries in her country, without parents navigating things. Some of them, I am sure, were helpful and others not. It always matters WHO performs your surgeries, especially if you are a rare one like Hannah.
Hannah could not stand up straight, she was in about a 90-degree bend. She did not have knees in the place where they usually are. Walking was a huge challenge. Before we left her home country, she asked her guide to translate this question to us, "Ask my parents if I will ever walk?"
We arrived back in the States in late July 2019 and immediately began seeking medical advice concerning Hannah. Then the pandemic took the world by storm. We are self-employed jewelry makers who rely on trade shows to support our family of seven. We found ourselves in a financial situation, and the thoughts of helping Hannah anytime soon seemed to fade. It was October of 2020 when I felt God nudging me to take her back for another consultation with several doctors with opposing views. The situation that remained was that with major surgeries, Hannah could have straight legs and stand, but likely her knees would not BEND! That was not an option for us to gamble with.
From that meeting, we decided that we would be seeking help from an expert at the Paley Orthopedic and Spine Institute, Dr. Feldman. The Paley Institute is a place with a lot of experience and specializes in more complex cases. I remember that Zoom meeting with Dr. Feldman in October and expressed my concerns about needing knees that bend. He said this, "Not bending is NOT an option! " She will walk, and her knees will bend.
God made the way financially during the pandemic despite our income problems through SO MANY giving people. We never even made a plea for help. It just poured in. In January, we loaded up and made our way to Florida. While her case was complicated, Dr. Feldman and Dr. Huser, with what we believe was God's GREATEST favor and wisdom, performed miracles on her legs. We have only been home for about eight weeks, and we feel sure that Hannah has surpassed all expectations to date!
We will edit our story soon to report more of her miraculous story as it unfolds. Hannah is enjoying the freedom of standing tall, walking with knees that bend. She is riding a bike, swimming, and loving her freedom! Thank you, Dr. Feldman, Dr. Huser, Monique, and the whole Paley team.
Please don't let the details of "the how" stop you from getting what you know your child needs. There are MANY ways to make it happen! The love and support at Paley is very evident! We are so glad to be a witness to all this greatness. We are forever grateful and thank God for his mercy and goodness!