At just 5 years old, Frankie is already proving that determination knows no bounds. Born with Arthrogryposis Multiplex Congenita (AMC), she has trouble with her joint moving the way it should. But with the expertise of the orthopedics team at Nemours Children’s Hospital, Delaware – including Dr. Jennifer Ty for upper extremities and Dr. Reid Nichols for lower extremities – Frankie has gained strength, confidence, and the tools she needs to thrive.
During her mother, Lindsay’s, 11-week ultrasound, doctors noticed an unusual positioning of Frankie’s arms. This was a moment that changed everything for Lindsay and her family. “The rest of the day is a blur,” Lindsay shares. “We started genetic testing, but there were no solid answers. It was very overwhelming.”
Uncertainty followed Lindsay and her family throughout the pregnancy, with no definitive diagnosis until Frankie’s arrival. But one pivotal meeting at 36 weeks helped to ease some of their fears when they were introduced to Nemours Children’s.
Referred to Nemours by their maternal-fetal medicine specialist, Lindsay and her family met with Dr. Ty for the first time. From that moment, they knew they were in the right place.
“That conversation was the first time we felt we had a team on our side,” Lindsay shares. “It was comforting to know that Dr. Ty was going to be my first call once Frankie was here – and she couldn’t wait to meet her!”
When Frankie was born, her family finally found out she had been diagnosed with AMC. AMC is when children have stiffness and loss of motion in more than one joint. Joints may stay straight and not bend, or they may stay bent and a child can’t straighten them.
With one of the top AMC clinics in the country just a short drive aware, Frankie’s family felt incredibly lucky. They soon met Dr. Nichols, whose expertise further reinforced their confidence in Frankie’s care.
Frankie visits the arthrogryposis clinic every four to six months, where her care includes bracing, physical and occupational therapy, stretching, and surgery. Every visit is more than just a medical appointment – it’s a confidence boost.
“The team always builds Frankie up and focuses on her strengths – there are so many!” Lindsay says. “She walks out of her appointments standing a little taller and feeling good about herself.”
Beyond the medical expertise, it’s the warmth and dedication of the entire Nemours team that makes a lasting impact. From the front desk staff to the nurses, residents, and clinical team, everyone greets Frankie with genuine care.
AMC is a lifelong condition, but it does not define Frankie. She has learned to adapt, overcome challenges, and embrace every opportunity. Today, Frankie is playing soccer and does dance – proof that she’s not letting anything hold her back! “She knows exactly what she is capable of,” Lindsay shares. “We feel so encouraged knowing that we are on the right track with her therapies and treatment plans.”
To other families facing a similar journey, Lindsay offers these words of encouragement, “Look for the small wins, the positives, and the encouraging moments. Yes sometimes it’s just hard, and you’ll feel defeated. But at the end of the day, this little person has changed your life for the better! You got this!”
With the support of her family and Nemours Children’s, Frankie’s future is bright.
