Lily’s Story

Jul 24,2019

When our daughter, Lily, was 18 months old we noticed a large bump on her femur. Our pediatrician at the time was convinced it was related to the bones. We were referred to a pediatric orthopedic surgeon who ordered x-rays. The x-rays confirmed it was a bone disorder, MHE to be exact. The orthopedic followed Lily yearly. When Lily was 8 years old, she needed surgery on both her forearm and ankle. With neither surgery successful, we were again facing more surgeries on her arm and ankle. Her hand surgeon gave us 2 options, with the ultimate decision being left up to us to decide. At this same time, Lily had lost her ability to navigate stairs correctly. We continued to express our concerns regarding her range of motion in her ankles, but the surgeon reassured us that everything was okay. It was at this point that we reached out to Sarah Ziegler from the MHE Research Foundation. Sarah suggested we set up an appointment at the Paley Institute. Lacking answers and guidance from our surgeons in St. Louis, we took a leap of faith and traveled to the MHE Clinic in West Palm Beach. This was the best decision we could have made.

Our first appointment at the MHE clinic was unlike any appointment we had in Lily’s first 11 years. Dr. Feldman’s knowledge of MHE was immediately apparent. He shared measurements that had never been shared with us prior to this visit. If measurements were taken by her orthopedics in St. Louis, they were never shared with us. Dr. Feldman skillfully provided us a cohesive plan to correct all areas of concern. Doing all of this while attentively listening to all our concerns and answering all our questions. He also made us aware of the broken staples in Lily’s right ankle from her prior surgery in St. Louis. Everything Dr. Feldman suggested was proposed to correct Lily’s ankles, hips, and forearms, resulting in easier movement and prevention of future problems.

Lily has, to date, had 5 surgeries at The Paley Institute all under the skillful hands of Dr. Feldman. Surgery is the last thing we as parents wanted for Lily. The very thought of Lily having surgery and the hospitalization was scary for us and Lily. Dr. Feldman completely understood the pain and anxiety Lily had prior to each surgery and did everything possible to make sure she was at ease. We knew Lily was in skillful, caring hands, which made it bearable. Dr. Feldman met with us immediately following each surgery, in person, not over the phone.

Dr. Feldman is an extraordinary surgeon and an excellent human being. We cannot thank him enough for the support, concern and unmatched skills. Dr. Feldman completely understood what we as parents and Lily as a patient experienced. He understood the challenging road Lily faced, he knew she would have preferred being back at school with friends and yet, he kept all of us focused on the positive outcome that would change Lily’s life for the better. Our hearts are full of gratitude for the nurses, child life specialists, physician assistants, therapists, anesthesiologists, nursing assistants, and Paley staff that have become our family away from home. We couldn’t be more thankful, more grateful, more aware of the blessing Dr. Feldman, Tiffany, Nicole, and Sarah have been. In a world where hero labels are often misplaced- we choose Lily and Dr. Feldman as our true heroes!

Tim and Becky Diehl

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