On the Pulse

It Takes a Village: Siobhan’s Journey With Arthrogryposis and the Power of Community Support

June 14, 2024

Toddler girlSixteen-month-old Siobhan Naylor is a typical toddler in many ways. She's vivacious, determined, and full of joy. She loves playing with her toys and engaging with other kids, and has begun to speak. But her journey hasn't been that of a typical toddler. Diagnosed with arthrogryposis multiplex congenita (AMC), a condition characterized by multiple joint contractures, Siobhan has been treated at Seattle Children’s since she was 4 weeks old.

Siobhan and her family’s journey with arthrogryposis intertwined with the compassionate and expert care of Seattle Children's Orthopedics and Sports Medicine team is an inspiring tale of resilience and the importance of community support.


When Siobhan was born, she was admitted into the Neonatal Intensive Care Unit (NICU), primarily due to feeding difficulties — a common issue among children with AMC. The family’s stay in the NICU provided an invaluable opportunity to learn more about navigating the medical landscape they would soon spend most of their time in.

Siobhan’s mother, Alaina Naylor, talked about her and her husband’s first appointment at Seattle Children’s, saying “I remember walking into the building and feeling so at ease; being greeted by the kindest receptionists, surrounded by so many other children and working with the most incredible doctors. We quickly realized we would be in the best hands whenever we walked through those doors.”

Therapies and Daily Life

Therapy is the foundation of Siobhan’s treatment journey. Siobhan attends bi-monthly occupational therapy sessions at the Bellevue Clinic and Surgery Center, helping to strengthen muscles, improve the overall functionality of her joints and develop fine motor skills so she can play and interact with her environment like other toddlers her age.

Alaina described how occupational therapy has helped Siobhan, saying “No one would know that she has contractures — she has made incredible progress thanks to her occupational therapist, Pam Horn. Her right arm is fully relaxed, and her left arm is gaining so much strength. Pam and Connie Leibow, her physical therapist, also spearheaded resources like adaptive devices that have positively impacted Siobhan’s daily life and encouraged us to attend the annual arthrogryposis family get-together”.

Importance of Community and Support

Toddler girl and her parents in a GoBabyGo car
Siobhan Naylor in her GoBabyGo car with her parents

The team at Seattle Children’s held an Arthrogryposis Family Social in September 2023. It was such a big hit that the families requested it be an annual event. The next social is planned for the fall of 2024 for families treated at Seattle Children’s. Pam Horn described the impact of the event, saying “It was so nice seeing the kids interact with one another, while the parents were talking and sharing their experiences. We feel this is an important part of their journey and crucial in helping our families make these connections.”

It was at the family get-together that Siobhan’s parents met a team of University of Washington students that changed their perspective of adaptive devices.

The UW HuskyADAPT program aims to meet the needs of every child with limited mobility function, which is why they created the GoBabyGo car. The first-of-its-kind modified battery-operated car helps provide children with greater independence and control over their mobility to explore the world around them.

Toddler girl in an adaptive chair
Siobhan Naylor in her adaptive chair

“The Seattle Children's Hospital community has so many resources that we had no idea existed when we began our journey. Financial assistance, peer counseling and meet-and-greets, to name a few, have supported our family along the way. Our occupational therapist and physical therapist helped us get connected and supported us to acquire unconventional mobility devices like the GoBabyGo car and adaptive chair,” said Alaina.

The adaptive chair has impacted Siobhan’s daily motor function in more ways than one. She’s able to stretch her knees, bend her legs and use her arms, all while being completely physically supported. “She can sit in the kitchen while Dad cooks and can be included in daily activities — it has made a huge difference in our lives,” said Alaina.

Advice for Families

We asked Alaina what advice she would give to families starting their journey at Seattle Children’s. “Being immersed into the medical world is overwhelming, from appointment scheduling to anticipating bills, worrying about how your child may act in an appointment, to the anxiousness around outcomes. My advice to other parents would be to lean into the resources Seattle Children's offers. You and your child will receive the best care among experts who will provide the guidance you need.”