When Patrick Jerzyk was born in March 2020 — right as the world shut down for COVID — his parents Zach and Anna had no diagnosis, no roadmap, and no way to be in the hospital together. What they had was each other, two daughters at home, and a gut feeling that something was uniquely special about their son.

Patrick has Trisomy 9 (Partial Trisomy 9P) — a rare chromosome disorder in which there is an extra partial copy of the ninth chromosome. In this episode of the Talking Trisomy podcast, Zach and Anna sit down with SOFT President Nick Holladay for one of the most joyful, honest, and moving family conversations the podcast has ever had — including a surprise appearance from Patrick himself, along with big sisters Sophia and Ariana.

Patrick — Newborn

NICU Days

Early Days

The Jerzyks live in the Chicago area and have been part of the SOFT community since Patrick's diagnosis. They attended the SOFT Annual Conference where Patrick — with his fleet of toy cars stuffed in his sweater pouch — became something of a star. As Nick put it on the podcast: "Patrick's got a little fame to him growing."

What Is Trisomy 9?

Trisomy 9 is a rare chromosome disorder caused by the presence of an extra copy — or partial extra copy — of chromosome 9. Like other trisomy conditions, it falls within the broader family of rare chromosome disorders supported by SOFT.

One thing that sets Trisomy 9 apart from Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) is that the diagnosis is often made after birth rather than prenatally. Prenatal screening does not always flag it, which means many families — like the Jerzyks — learn about the condition in the days and weeks following delivery. Learn more about Trisomy 9 on the SOFT website.

Born During COVID With No Diagnosis — The Early Days

Patrick was born in March 2020, the same week that COVID lockdowns swept the country. Anna had been monitored throughout pregnancy for IUGR (intrauterine growth restriction), and while doctors noted a small opening in his heart — common in many newborns — everything else appeared average. But Anna had a gut feeling something was different, and she trusted it.

At birth, Patrick arrived sprawled out like a star — floppy, wide-eyed, with features Zach and Anna immediately knew were different. Within hours, his oxygen levels began dropping and he was moved to the NICU. The family was at Northwestern Hospital in Chicago. COVID restrictions meant only one parent could be in the building at a time.

Patrick at Lurie Children's

For the next several weeks, Zach and Anna alternated days at Patrick's bedside while Sophia and Ariana waited at home. No diagnosis. No certainty. Just the beeping of monitors and the reassurance of a care team they had not yet fully found.

The Transfer That Changed Everything

One nurse at their local hospital pulled Anna aside and said: you have two options — Lurie Children's downtown Chicago, or a hospital in Wisconsin. That single conversation set the course of Patrick's life.

Anna came home, and together they put their foot down. Patrick was transferred to Ann and Robert H. Lurie Children's Hospital of Chicago in a small transport incubator. Zach and Anna drove separately through a ghost-town version of downtown Chicago — empty streets, no traffic, the city completely still.

Lurie Children's has been building one of the country's most comprehensive approaches to rare chromosome disorders, including Trisomy 9, Trisomy 18, and Trisomy 13. The Jerzyk family experienced that firsthand — a full team waiting, a care roadmap laid out, and a culture where parents are treated as partners rather than bystanders.

Patrick spent roughly six weeks at Lurie's — including his first Easter and first holiday away from home. He received a G-tube, oxygen support, a sleep study, and eventually his genetics workup. It took about two weeks for the test and another two to three weeks for results. Thirty days of not knowing.

The Trisomy 9 Diagnosis — "I Could Finally Breathe"

When the genetics team at Lurie's sat Zach and Anna down to share Patrick's results, they expected the worst. What they got instead was something unexpected: clarity without darkness.

Zach echoed the same feeling. The genetics team delivered the news with positivity rather than doom — this is what Patrick has, here is what we found, here is the path forward. There was no looming sense of hopelessness. And then the doctor told them something that would change their lives: go online, go to Facebook, find the community.

This is precisely why SOFT exists. The organization was founded by two parents calling each other on the phone, building connection one family at a time. Forty years later, that same principle holds — finding community transforms a diagnosis from an ending into a beginning.

Patrick at Almost Six: Cars, Magnets, and the Simpsons

Patrick communicates through sign language and is beginning to add spoken words. He is a quick learner — his teachers regularly find themselves surprised by what he already knows. He carries approximately 28 to 30 toy cars with him at any given time, often sneaking them into school in his sweater pouch. His family describes him as electric. Nick Holladay, who met Patrick at conference, agrees.

He also loves magnets, enjoys watching The Simpsons with his family, and has a gift for making people feel like they are exactly where they are supposed to be just by being in the room with him.

Zach put it simply: Patrick sets the pace. He hits every milestone — just on his own timeline, and when he hits it, he hits it like he's been doing it forever.

What Patrick Has Taught His Sisters

Patrick with Big Sisters Sophia and Ariana

Understanding Partial Trisomy 9P

Patrick has Partial Trisomy 9P — meaning there is an extra partial arm of the ninth chromosome present in all of his cells. This is distinct from Mosaic Trisomy 9, where the extra chromosome appears in only some cells, or Full Trisomy 9.

During Patrick's workup, Lurie's also tested Anna and Zach — and discovered that Anna carries a chromosomal translocation (two chromosomes that are swapped). This type of finding can explain how a partial trisomy occurs and is important information for families thinking about future pregnancies.

Patrick — Before Alopecia

Patrick — Toddler Years

Patrick also has alopecia areata — an autoimmune condition unrelated to his Trisomy 9 diagnosis in which his body attacks its own hair follicles. He began losing his hair between ages two and three. Anna, a professional hairdresser, has channeled that experience into volunteering to give haircuts to children with sensory processing challenges who cannot tolerate traditional salon settings.

Resources for Trisomy 9 Families

SOFT has published a Trisomy 9 New and Expectant Parent Book — currently in development — which will feature Patrick and his family alongside other Trisomy 9 children. Digital copies will be available at trisomy.org. Print copies will be available through Amazon and mailed directly to pediatric centers around the country.

About SOFT and the Talking Trisomy Podcast

SOFT — the Support Organization for Trisomy 18, 13, and Related Disorders — is the leading nonprofit serving families affected by Trisomy 9, Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), and related rare chromosome disorders. With a national community of nearly 4,000 registered member families, SOFT provides peer support, educational resources, and an annual conference that brings families and clinicians together.

The Talking Trisomy podcast features family stories, clinician conversations, and advocacy discussions covering all things trisomy. Episodes are available on YouTube and Spotify. The 2026 SOFT 40th Annual Conference takes place in Loveland, Colorado in July 2026.