On this Arthrogryposis Multiplex Congenita (AMC) Awareness Day, we shine a spotlight on two remarkable women, Ewa and Sara, whose journeys with AMC have inspired countless individuals.
Ewa’s journey with Nemours Children’s Health began in 1986 when she traveled from Poland to receive treatment for AMC, a rare condition affecting 1 in 3,000 births. Nemours became her second home, offering life-saving care and support from a dedicated team of doctors and therapists. “Nemours, along with my family, truly shaped me into the person I am today,” Ewa shares. Her gratitude for the care she received has fueled her commitment to give back through various fundraising initiatives, including Nemours Radiothon, Brace for the Race, and an annual toy drive.
In her latest endeavor, Ewa organized a book fundraiser for another Arthrogryposis patient and author, Sara Gaver. For every book donated, Ewa matched the donation, resulting in a collection of 110 copies of Sara’s book, “Take the Crown,” to be distributed to patients at Nemours Children’s Hospital, Delaware. Ewa’s motivation stems from her own experiences of kindness and support, such as the memorable moment when a good Samaritan gifted her a Teddy Ruxpin during her hospital stay. This gesture of compassion continues to inspire her to give back to the hospital that has given her so much.
Sara Gaver, the author of “Take the Crown,” also has a deep connection with Nemours Children’s. She began her treatment at Nemours at just 6 months old and underwent 14 surgeries by the age of 11. Despite moving away from Delaware, her bond with Nemours and its community remained. Sara’s book, inspired by her nine-year career in pageantry, aims to redefine beauty standards and empower young readers to pursue their dreams without letting obstacles stand in their way.
Sara’s dedication to advocacy extends beyond her writing. She models for adaptive clothing designers, runs a travel blog, and speaks nationally on disability awareness. Her collaboration with Ewa on the book fundraiser was a natural extension of her commitment to making a positive impact. “Ewa came up with the idea, and we ran with it,” Sara explains. Together, they hope to raise awareness and support for people with disabilities while celebrating the beauty of the human spirit.
Although Ewa and Sara have never met in person, their connection through social media and support groups has blossomed into a meaningful partnership. They share ideas on independence and daily living. Their collaboration on the book fundraiser not only supports Nemours Children’s, but also highlights the power of community and shared experiences. Their journeys, filled with perseverance, gratitude, and a commitment to giving back, serve as an inspiration to us all. As Sara plans to release another book and continue her advocacy work, and Ewa continues her fundraising efforts, their contributions will undoubtedly inspire many more.
