June 2022 AMCer

Chris and Roxanne McMillan live in Michigan and have been married for 16 years. When Shelby was born, they found out she had Arthrogryposis Multiplex Congenita and bilateral clubfeet. Shelby is only affected in her lower extremities (her legs).

Despite her physical challenges, Shelby is incredibly determined to reach her mobility goals. Corrections on her clubfeet started when she was an infant with her first surgery at age 1. A tenotomy was performed (heel cord/tendon release), where the surgeon clipped the tendons at the back of her heels to allow her feet to stretch up into a 90 degree angle for standing. At age 3 she relapsed and had to have another tendon release.

It was then that the family started researching more about Arthrogryposis and found other families and social media groups online, individuals with similar and different types of Arthrogryposis. These groups and families became a great support system. Exploring those groups and connecting with the families is how Shelby’s parents found Dr. Feldman and The Paley Institute.

The family met with Dr. Feldman back in 2018 and he recommended a surgery for Shelby to release the nerves in her hips and knees in an effort to improve her core. With the help of their local community, they were able to fundraise enough for Shelby to have this life changing procedure and Shelby had her surgery at The Paley Institute in West Palm Beach, FL back in March of 2019.

However, over the past year Shelby has grown tremendously, which has caused her to develop knock knees. Dr. Feldman has recommended another surgery to correct her knock knees so Shelby is scheduled for surgery with Dr. Feldman and his team at the end of June 2022. Shelby and her mom will be traveling back to West Palm Beach, FL for this procedure and Shelby’s post-op care/therapy and will return home to Michigan in mid-July.

Helping AMC Families will be assisting the McMillan family with the cost of lodging during their stay in Florida. Additionally, when AMC families travel out-of-state for medical care, they often have to pay for a special/individual medical policy to cover their child’s care because in-state insurance back home will not cover out-of-state specialty care. Because this is an added expense to the family budget, Helping AMC Families will also be covering the cost of Shelby’s private insurance policy for the months of June and July, 2022 while she and her mom are in Florida for this procedure as well as any out-of-pocket expenses that arise from her surgery/treatment.