April 2023 AMCer

Alizay (Ali) was diagnosed with Arthrogryposis Multiplex Congenita (AMC) the first few days in the hospital. At the time, her family knew she had clubbed feet, however, no one realized she also had AMC.

Ali is being raised by her bio grandmother (now Mom), Ronda, who was given full custody when Ali was just 3 months old. Ronda and her husband later adopted Ali but started caring for her and taking her to Shriners Hospital for Children in Chicago for treatment when she was only 2 months old.

Ali had her first surgery at the age of 4 months. She required a lot of casting on her legs as well as braces, shortly after that first surgery. They continued to work with Shriners in Chicago for the first 8 years of Ali’s life. During that time she had 24 surgeries before the family decided to change locations to what they believed to be a better AMC specialist at Shriners Hospital for Children in Philadelphia, PA.

When Ali was 9-years-old, an uppers surgeon (who treats the upper extremities) performed surgery on both of Ali’s arms to internally rotate them. The goal was to help with positioning and give Ali better mobility for the future. They also went to a highly recommended, “best out there” lowers surgeon (doctor who treats the lower extremities) perform two leg surgeries and a spine surgery. Unfortunately, most of the surgeries Ali had at Shriners in Philly ended up causing more harm than good and they were left frustrated.

While attending the AMC conference in Ohio in 2019, the family met Dr. Feldman who works at The Paley Institute in West Palm Beach, FL and Ali was intrigued by everything he had to say. She asked her Mom if Dr. Feldman could help her walk and then decided to ask Dr. Feldman herself! He told Ali that he felt he could help her to walk so, after trying to figure out how to make it happen; Ali headed with her Mom and great-grandmother to see Dr Feldman in Florida. The trip was very expensive and exhausting but Ali’s Mom was and still is willing to do whatever is necessary to help make Ali’s dream come true. Ali just wants to be able to walk.

Since they moved their life from Michigan to Florida to work with Dr. Feldman, Ali has had 7 surgeries on legs, feet and spine and she now has a straight spine, after having scoliosis! At the beginning of 2022 Ali started attending therapy sessions at BARWIS, an intense physical therapy and neurophysiology training center that works with athletes and individuals recovering from injury or require therapy intensives to help increase their mobility and function. However, these sessions are not covered by any type of insurance so they must be paid out-of-pocket. 

The hard work and sacrifice has all been worth it, as Ali is now able to stand up and sit on the edge of a bed for the first time. However, Ronda has been a single Mom for about 10 years now, after the loss of her husband, so it can be a struggle to get Ali all of the treatments she requires and the medical equipment she needs. This is why Ronda reached out for help.

Ali is a very outgoing young lady. She is always smiling. She loves being a member of her school’s marching band, playing piano, singing in the choir, and performing in theatre. Ali is currently a Sophomore in high school.

Helping AMC Families Incorporated is assisting Ali and her Mom with $5000 towards the cost of attending specialized therapy intensives at BARWIS in Florida, to help Ali become stronger and gain more mobility. Any remaining balance can be used for up to one year to help with other medical needs that they encounter.