When Lia’s mom, Ashley, received her daughter’s Turner Syndrome (TS) diagnosis at just 12 weeks gestation, the world shifted. A flagged NIPTS test, followed by confirmation through amniocentesis and CVS testing, brought a wave of fear and uncertainty.
“My world came crashing down,” she shares. “Not being able to enjoy my pregnancy still sits with me deep in my soul.”
But in the face of overwhelming emotion, she found support in community. The Turner Syndrome Foundation’s website, Instagram, and Facebook groups became lifelines. “It was so helpful to see these beautiful girls, living and thriving, to really pull me through mentally.”
Lia’s diagnosis was confirmed as mosaic TS after birth with a karyotype, but Lia continues to shine brightly despite her diagnosis.
“She is a brave little one with the biggest heart and the fiercest attitude. She truly embodies the phrase ‘Though she be but little, she is fierce.’”
Now three years old, Lia is thriving in school and showing the world that Turner syndrome is just one thing that makes her special.
Turning Pain Into Purpose
Lia’s journey not only changed her family’s life, it sparked a movement. About a year after Lia was born, her mom’s best friend and fellow teacher received a life-changing diagnosis of her own. Her second child, Xavier, was diagnosed in utero with Snijders Blok-Campeau Syndrome at 30 weeks.
As teachers, these two moms knew they wanted to do more than navigate rare diagnoses alone. They wanted to support other families, spread awareness, and raise funds for research and care. In 2024, they launched their first fundraiser: Show Your Stripes for Xavier & Lia.
The first event laid the foundation, but 2025 brought even more momentum. They hosted a large event in Queens, NY, filled with family, friends, and generous local vendors who donated goods and services.
During planning, they discovered that a former student they’d both taught was also living with rare conditions. His mother joined the cause, and the fundraiser grew to include four rare disease foundations, including the Turner Syndrome Foundation and NORD.
A Community of Support
Together, the group raised an incredible $10,000, supporting each of the featured organizations. The funds also helped purchase a communication device for Xavier and assisted the Batista family during a hospital stay over the holidays.
“Next year will be our third annual fundraiser, and we hope to continue with the tradition.”
With each year, this grassroots effort grows stronger—and it all began with the love for one brave little girl named Lia. Ashley, Lia’s mom, said “I am thrilled to be able to be part of such an amazing organization like the Turner syndrome Foundation.”
Sharing Hope
We are honored to share Lia’s story and celebrate the impact one family can make. Thank you to her incredible mom, her circle of support, and everyone who has joined them in showing what it means to be born to be brave.
Together, we can create a world where every girl with Turner syndrome knows just how fierce and capable she truly is!
Would you like to make an impact by starting a fundraiser in your local community? Submit our event organizer form to get started!
Written by Ashley Fernandez, Lia’s proud mom. Designed by Delvis Rodriguez, Digital Marketing Coordinator
© Turner Syndrome Foundation, 2025
Thank you so much for giving us the opportunity to share our story! We feel so grateful to have a community like this and support from this foundation!