Everly was born with Fibular Hemimelia and Congenital Femoral Deficiency in her left leg — she had lacked ankle structure, had a dislocated hip (not born with it), and did not have a fibula. After seeing multiple specialists in the United States we finally met with Dr. Paley and his team when Everly was 6-months old.
We were advised to attend Children’s Mercy in Kansas City, Ks for roughly 6-months to attempt fixing her dislocated hip without having surgery, albeit with no success.
At that point, Dr. Paley confidently and calmly put us to ease with a concrete gameplan: Everly would need SUPERhip and SUPERankle surgeries before any lengthening could begin.
Then Covid-19 hit. While the world was seemingly turning upside-down, Dr. Paley assured us that nothing would change with Everly’s first corrective surgeries (SUPERhip and SUPERankle) in April of 2020 as she was only 18-months old. Both surgeries went according to plan and Everly was up and running, literally, once she came out of her spica cast.
The next step in the process was Everly’s first limb-lengthening in April of 2021 at the age of two. Everly qualified for the internal device that would lengthen her femur. Dr. Paley and Dr. Shannon were incredible. Dr. Shannon would regularly and promptly answer emails with any questions we as a family had following surgery. As of now, the medical team believes that she will most likely need 2-3 more limb-lengthening surgeries.
Following this surgery we got to experience the full Paley Experience — and that is the “family” that is the Physical Therapy team. Daily PT seemed daunting, but Everly looked forward to seeing her therapists and friends she met at PT. We as a family equally looked forward to seeing these familiar faces and smiles and we were able to make lifelong friends.
Dr. Paley, Dr. Shannon, and the entire PT team at the Paley Institute have given our daughter the chance to excel in life. We still have many more years in this journey, but we are 100% confident the Paley Institute is the #1 place in the world for our daughter’s needs.
Tyler and Shauna, proud parents of Everly
