From Fear to Family: Gina Csontos and Mark’s Trisomy 13 Journey

Introduction

Receiving a diagnosis of a chromosomal condition can turn a parent’s world upside down. For Gina Csontos, the news that her son Mark had Partial Trisomy 13 was not just a medical revelation—it was the beginning of a life-changing journey. Through fear, grief, growth, and connection, Gina’s story reflects the resilience of a mother and the deep love she holds for her child. Here’s their story, in her own heartfelt words.

A Mother’s Initial Emotions

“I was scared, grieving, and overwhelmed all at once.” That was how Gina described her emotional state when she first heard about Mark’s diagnosis. The future felt uncertain and heavy. Like many parents thrust into the world of trisomy, Gina had no roadmap, only a mix of painful emotions and questions about what life would look like for her child and their family.

“I was a first time mom and had no idea what was going on. As a NICU nurse I knew it was bad but as a mom I was completely lost. I wanted to make the right decisions but also take him home. I was so completely in love with him but also scared. We had no idea he was going to be trisomy. So at delivery everything was a surprise. They wisked him away to the NICU.”

The Day Mark Was Born

“I was overwhelmed with emotions. What I thought would be the happiest day of my life quickly became the hardest day.” Mark’s birth brought a tidal wave of feelings. What should have been a moment of pure joy was instead complicated by the reality of his diagnosis. Yet beneath the fear and sadness, there was also love—a powerful, immediate bond that would shape every step of their journey.

Evolving Through the Trisomy Journey

“Trisomy became more normal to me through time.” As the days turned into weeks, and the weeks into years, Gina’s view of trisomy transformed. The once-foreign concept became a part of their daily life. What had started as fear and confusion evolved into understanding, advocacy, and a strong sense of purpose.

“It wasn’t the journey I expected but it turned out to be the best blessing we ever had. Mark loved is unconditionally. He taught us about strength and perseverance. He was amazing in every way.”

The journey has not been without its challenges. There have been hard days, uncertainties, and emotional tolls. But the rewards have been profound too—watching Mark grow, celebrating his milestones, and being part of a supportive trisomy community.

Finding Support and Strength

“SOFT was and is our family and go-to resource. SOFT has supported us in every possible way.” Gina credits the Support Organization for Trisomy (SOFT) as a cornerstone of her family’s journey. It offered more than just information—it offered connection, understanding, and a sense of belonging.

“They are always a phone call away. We still come to conferences 20 years after our son’s passing but we get strength seeing all of the new Trisomy babies and kids.”

Whether it was through conversations with other parents, accessing vital resources, or finding emotional encouragement, SOFT provided the strength Gina needed to navigate each step of the path with Mark.

Advice to New Parents

“For new parents, I say take each hour and each day as it comes. Don’t let anyone else put limits on your child. Our trisomy kids will show you what they can do. Enjoy the little things—they really are the big things.”

“Don’t focus on the negative and look for the positives. Advocate for what is right for your family. Don’t be afraid and enjoy each minute you have with your child.”

Gina’s words are both tender and powerful. For families just starting their trisomy journey, she offers compassion and wisdom gained through lived experience. It’s a reminder that hope can grow in the most unexpected places, and that joy often lives in the smallest, everyday moments.

Conclusion

Gina Csontos’s story with her son Mark is one of courage, transformation, and love. From the fear of diagnosis to the strength of advocacy, her voice speaks for many parents on this path. And through it all, one truth shines clearly: every child, no matter their diagnosis, brings light into the world. With support, community, and endless love, families like the Csontos family remind us that the trisomy journey is not just about challenges—but about hope, resilience, and family.