A Spark of Hope: Yenyen’s Milestone Moment with FOXG1 Syndrome
Chiara Francienne — lovingly known as Yenyen — is a bright and bubbly 10-month-old from the Philippines whose journey is inspiring families in the FOXG1 syndrome community worldwide.
Yenyen was diagnosed with FOXG1 syndrome earlier this year, a rare neurodevelopmental disorder caused by changes in the FOXG1 gene. Her family received her diagnosis in February, discovering she has a 10.9Mb deletion (14q12q13.3). This diagnosis made her one of the very first known FOXG1 patients in the Philippines.
While a diagnosis can feel overwhelming, for Yenyen’s parents, it became a powerful first step toward acceptance and understanding. As her mother, Fretziel, shared:
“I know having a diagnosis can be scary, but it was actually the first actual step to accepting and fully embracing our Yenyen — giving her better care knowing what challenges to expect, and not putting too much pressure on her or ourselves as parents.”
Celebrating a Hard-Earned Milestone
Recently, Yenyen achieved an incredible milestone: holding herself upright with head control. This may sound simple, but for children with FOXG1 syndrome, it’s a major achievement that often requires months — or even years — of therapy and dedication.
Yenyen began working on this milestone back in February, before her diagnosis. At first, she struggled with sensitivities in her hands and hyperextension in her neck, making it difficult for her to bear weight on her hands or keep her head down. Through traditional physical and occupational therapy at home (up to twice a week each), and intensive therapy sessions six hours away from home, she made steady progress.
These intensive sessions included a specialized approach called DMI (Dynamic Movement Intervention), which played a crucial role in building her strength and coordination. During her first intensive, Yenyen focused on head control; in her second, she worked on bending and pushing with her hands while keeping her legs bent — all fundamental skills for future milestones like sitting and crawling. Check out her therapy center and therapist!
Yenyen and her family
A Moment That Sparked Hope
In a recent video shared by her family, Yenyen can be seen holding herself upright for the very first time. For her mom, this moment was deeply emotional:
“Even if it was under a minute, I felt a tiny hope in me spark again — hope that someday she will be sitting on her own, standing on her own, and best case, walking on her own, if life permits it.”
It wasn’t just about holding the position — it was about seeing Yenyen’s face light up with pride and amusement at what she was capable of doing. Her smile wasn’t only a reflection of others’ joy but an expression of her own growing self-awareness and accomplishment.
Looking for more inspiring moments? Check out our Community Stories page to meet other FOXG1 families.
Looking Ahead: What This Means for Yenyen
Thanks to her improved head control and ability to push with her hands, Yenyen is now working on new skills that will help her sit, crawl, and eventually roll over independently. Each new step builds on the last, creating a foundation for even more progress in the months and years to come.
Explore more about FOXG1 milestones and development to understand how these early steps lay the groundwork for future growth.
A Message for Other FOXG1 Families
When asked what they would share with other families navigating life with FOXG1 syndrome, Yenyen’s parents offered heartfelt advice:
“Taking care of our foxes is not only difficult; it can be demanding and overwhelming. But we learned to hang in there and take it one day at a time — to inhale our foxes’ warm smiles and happy moments, and exhale the hard and heartbreaking ones. At the end of the day, no one else will have these unique FOXG1 moments — only us, their FOX family.”
Connecting the FOXG1 Community
Yenyen’s story is more than a milestone; it’s a testament to resilience, love, and the power of community. Her parents continue to share her journey to connect with other families living with FOXG1 syndrome — both to learn from one another and to inspire hope.
If you’re a family navigating FOXG1 syndrome, know that you’re not alone. We invite you to join our community and connect with other families who understand the journey.
FOXG1 Research Center is dedicated to understanding and finding treatments for FOXG1 syndrome and other neurodevelopmental disorders.
Our Team
Drs. Soo-Kyung Lee, PhD. and Jae W. Lee, PhD. are the principal investigators of FOXG1 Research Center. Our team is full of dedicated individuals with the common goal of studying FOXG1 Syndrome to find treatment options and further understand the condition.
Our Publications
To learn more details about our research, please refer to our publications.
