Our beautiful, smart and spunky little girl, Hollie was born on December 12, 2021 at Winnie Palmer Hospital in Orlando, Florida. She was immediately admitted to the NICU, where she stayed for three weeks before being discharged on January 4, 2022. During her NICU stay, Hollie was diagnosed with fetal arthrogryposis and bilateral talipes more commonly known as clubfoot. This condition causes the foot to turn upwards and inwards and resemble a golf club-hence the name. They also found her to have clenched bilateral hands, a slightly retracted lower lip, and significant lumbosacral lordosis. Upon discharge, we were advised to follow up with various specialists, including a pediatrician, geneticist, craniomaxillofacial surgeon, ENT, gastroenterologist, and orthopedist which we started as soon as she was released from the NICU at just 3 weeks old.

On January 15, 2022, we did genetic testing. The results came back positive for Freeman-Sheldon syndrome, a rare congenital myopathic craniofacial syndrome caused by mutations in the MYH3 gene.

It has been a long, hard journey with many weekly appointments to doctors and specialists. What felt like a year of casts on both of her legs every week, and 2 bilateral heel cord tenotomy surgeries done on May 31, 2022 and August 15, 2022 to help straighten her feet. She has done many hours of occupational and physical therapy along with bracing and has shown improvements.

It is obvious that Hollie’s feet (mainly the right one) has been turning back in. Meaning she now walks on the edge of that foot and is needing more corrections. In March we decided to get a second opinion for Hollie’s feet from Dr. Matthew Dobbs at the Paley Orthopedic & Spine Institute, who is a world renowned pediatric orthopedic surgeon specializing in clubbed feet and spine issues. Our consultation confirmed what we had feared, that Hollie will need 3-4 more sets of casts followed by another bilateral tenotomy surgery to fix her feet. She still has a long road ahead but the sooner she starts the easier the recovery will be, the longer she goes untreated the more complex the foot becomes to treat. Following the surgery she will wear casts that will stay on for another 3 weeks. When these casts are removed she will need to get measured for new customized AFO shoes for day time wear and boots and bar for night wear. She needs more Physical Therapy, Occupational Therapy and Speech/Feeding Therapy as well. They have set Hollie’s surgery date for August 1, 2024 and we need your help to make this possible.

This is a huge out of pocket expense for the casts, surgery, shoes, therapies, travel, accommodation and other unknown expenses the family will need. All donations, of any size, are greatly appreciated and will be used wisely to help get Hollie the care that she needs. Thank you from the bottom of our hearts for any help you might offer.

With deep gratitude,

The Sweeting Family