A Lifetime of Advocacy and Love: Barb VanHerreweghe and Stacy’s Trisomy 18 Journey

Introduction

When Barb VanHerreweghe learned that her daughter, Stacy Lynn VanHerreweghe, had Full Trisomy 18, she was thrust into a world she had never heard of before. With no internet and very few resources available at the time, Barb’s journey was paved with uncertainty, determination, and deep love. Today, her story stands as a legacy of advocacy and an example of what it means to turn fear into action, and isolation into community.

The Diagnosis: A World Unknown

“I had no idea what Trisomy 18 was. Back to very little communication or support.” That was Barb’s reality when she first heard the diagnosis. There were no smartphones to look up answers, no social media to connect with others, and little guidance from the medical world. She entered a journey filled with more questions than answers, but one thing was clear—Stacy was her daughter, and she was going to fight for her.

“They told me I could come alone as Dave drove a truck over the road and had to take jobs as they came. We had no idea the devastating news we were going to hear. Because testing took so long Stacy was already 3 months old. We were in love with this little girl and they told us to just take her home and love her. No pamphlet. No books, no computers to look ok up no. Just Drs telling us it may be her last day! I went home and tried reaching Dave on the road We knew where he was heading but had no cell phones then. We let the troopers in several states know the circumstances. He finally made his nightly call and I had to tell him the info on the phone. Dave had a sister with Down Syndrome who passed at 13 and so we started on a similar path. My biggest fear was is this the last day? Is the illness that will take her? How can such a beautiful baby have a death sentence”

The Day Stacy Was Born

Despite the looming diagnosis, Stacy’s birth was filled with joy. “The day she was born was happy. We had no idea anything was wrong.” It was only after her birth that the full weight of her condition came to light. But that didn’t change how much she was loved. Barb and her family were determined to give Stacy the best life possible.

“We had no idea We knew she was small but we had two miscarriages previously so this was our beautiful baby. She didn’t want to eat but I took many hours with an eye dropper and begging her to drink do shed live. She went home the first week. We had no idea. Her Pediatrician had called the local Children’s hospital with his thoughts on what was going on where they told him he was wrong and didn’t have enough wrong.”

Evolving Through the Years

“We went from… the first months of getting the diagnosis, being told to take her home and love her until she dies, to seeing her thrive for years.” Barb’s journey reflects a deep transformation—from fear and grief to acceptance and advocacy.

In those early months, the lack of support and grim medical predictions were devastating. But Stacy defied the odds, growing and thriving far beyond what doctors expected. With every milestone, Barb’s perspective changed. She no longer saw a prognosis—she saw potential.

“Early intervention, school programs as she grew older. Stacy traveled to all conferences when she was alive except the first. She went on 5 cruises and lived her some palm trees and fresh salt air. She loved attending her brother’s football games. Our favorite was her 30th birthday where we celebrated a wedding without a groom. Wedding/birthday cake, dj and friends from all over the world she danced with all her boyfriends. It was the day of a lifetime. Yeah it was a hard journey but one I would do all over again if given the chance. Her smile and songs lit up the world”

Finding Community in SOFT

“I finally found SOFT when Stacy was about 5. That changed everything.” The Support Organization for Trisomy (SOFT) became Barb’s lifeline. It provided information, connection, and hope. Suddenly, she wasn’t alone.

“The hospital cardiologist said they were a radical parent group and we wouldn’t want to call them. Ignored and called Kris Holladay and knew right then she was truly radical. The lady hugged you every chance she could. We loved for our newsletters 4 times a year. The books came by mail. But this group knew and understood our journey. We never turned back and decided to join this group and become radicals ourselves.”

Through SOFT, Barb connected with other families, learned to advocate more effectively, and found strength in numbers. It was a turning point—not just for her, but for the many families she would go on to help through her own advocacy.

Advice to New Trisomy Parents

“Trisomy 18 can be life-limiting, but our kids will show you what they can do.” Barb’s advice is filled with experience and hope. She urges parents to look beyond what the doctors say and to watch what their children tell them through their actions, smiles, and progress.

“Give them the chance, take it all in. Take pictures, enjoy smiles and songs everyday. Let those hugs be an every day part of your life. A little different life but so worth the journey and it was a perfect journey with Stacy Lynn as our tour guide.”

She reminds parents that every child’s journey is different, and no prediction can account for the resilience and love that trisomy children bring into the world. Barb’s message is clear: you are not alone, and your child’s life is valuable.

Conclusion

Barb VanHerreweghe’s story is one of trailblazing strength, boundless love, and unwavering dedication. From navigating an isolated and uncertain world to becoming a leader in the trisomy community, her journey with Stacy has created a path for countless other families to follow. Her story reminds us that while Trisomy 18 can be life-limiting, it is never love-limiting. And in Stacy’s life, and Barb’s voice, we see the incredible power of choosing love and advocacy, one day at a time.