Ryan’s Story: How One Trisomy 18 Family Helped Shape SOFT and Change the Narrative

A Diagnosis That Changed Everything

When Steve and Peggy Cantrell received their son Ryan's Trisomy 18 diagnosis in 1985, they were handed a brochure with a few handwritten phone numbers. No cell phones. No internet. No roadmap. Just a lobby payphone and the desperate hope that someone on the other end would pick up.

Someone did. And forty years later, the ripple effect of that moment is still being felt by thousands of families navigating Trisomy 18, Trisomy 13, Trisomy 9, and related rare chromosome disorders.

Ryan was born October 4, 1985, via emergency C-section after his heart rate dropped during delivery. Within days, his parents received a Trisomy 18 diagnosis under circumstances Steve describes plainly as mishandled. Peggy learned alone, without Steve present, in a hospital room 30 miles from where Ryan had been transferred.

What followed was a crash course in advocacy, faith, and survival. Ryan was placed on a ventilator three separate times, survived RSV and Pseudomonas pneumonia, came home on a trach with 24 hour nursing care, and transformed the family's bedroom into a mini NICU complete with a whole house generator. He thrived far beyond what any of his early doctors had predicted.

The Balloon That Started a Tradition

When Ryan passed away on Father's Day 1986, his funeral became the unlikely birthplace of one of SOFT's most meaningful traditions. Their church had used balloon releases on Easter, and the pastor carried that theme into Ryan's graveside service, releasing 200 helium balloons skyward. Instead of looking down at a grave, everyone looked up.

Weeks later, a balloon arrived at their mailbox carrying a tag that simply read: God loves you. It had traveled from Illinois. At SOFT's first annual conference in 1987, Steve and Peggy shared that story. By the following year in Philadelphia, the balloon release had become a conference tradition that would continue for decades.

What Steve Discovered About Light, Seizures, and Trisomy Kids

Steve Cantrell is not just a longtime SOFT member. He is also an optometrist, and his professional observations over decades have led to research with real implications for children with Trisomy 18 and Trisomy 13.

Through his work with patients experiencing photosensitive epilepsy, Steve began connecting what he observed at SOFT picnics, children hunched over with hands in their laps, to a clinical pattern. Light sensitivity. Light triggered seizures. And a possible solution.

Working first with specialty tinted sunglasses and later with custom contact lenses featuring a pupil filter zone, Steve and his team began seeing remarkable results. A published IRB study led by Dr. Elizabeth Teal of Massachusetts General Hospital documented the findings.

For children with Trisomy 13 who were fitted with the lenses, families reported visible changes almost immediately: improved muscle tone, better eye contact, improved skin color, and greater engagement with their surroundings.

The recommendation coming out of Steve's work: filtered sunglasses worn consistently, combined with lutein and zeaxanthin supplementation added to tube feedings, may reduce light triggered seizures and improve quality of life for children with trisomy conditions.

Nutrition, Community Knowledge, and the Power of Sharing

The conversation also surfaces the important work of Ann Barnes and her technical care book, which one SOFT mom famously printed in its entirety and brought to every medical appointment like a shield. Steve credits community driven discoveries, including a Kansas City family who found that adding blueberries and nutrient rich foods to their son Jude's tube feedings essentially reversed his seizure activity without medication, as exactly the kind of knowledge SOFT exists to spread.

From Disposable to Viable

Perhaps the most striking thread running through this conversation is how dramatically the narrative around Trisomy 18 and Trisomy 13 has shifted. In 1990, a medical ethicist at a SOFT conference asked what gave parents the right to bring these children into society. Today, the American Academy of Pediatrics has updated its guidance to reflect that children with these conditions can and should be offered all applicable care.

That shift, built on decades of advocacy, research, and family stories shared at SOFT conferences, is what Ryan Cantrell and thousands of children like him made possible.

Listen to the Full Episode

Watch above on YouTube or search Talking Trisomy wherever you listen to podcasts. If you or someone you love has received a diagnosis of Trisomy 18, Trisomy 13, Trisomy 9, Edwards syndrome, Patau syndrome, or a related rare chromosome disorder, SOFT is here.

Visit trisomy.org/expectant-parent to access free parent resources, or reach out to our team directly.