People with Down syndrome not defined by chromosomes: Loved ones see value and dignity of children created by God

An extra chromosome.

That’s what determines Down syndrome in an individual.

That difference, a full or partial copy of Chromosome 21, affects about one in 700 babies each year in the United States, or about 6,000 babies, according to the National Down Syndrome Society.

Besides cognitive delays, “people with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions,” the organization says on its website. “Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.”

There are other risks for those who have Down syndrome, though. The number of abortions following a prenatal diagnosis of the condition is not tracked in the United States, but one study (obgyn.onlinelibrary.wiley.com/doi/pdf/10.1002/pd.2910) suggested 67% of those pregnancies end in abortion. In other countries, those numbers are higher, with more than 90% of babies diagnosed being aborted.

The numbers can be alarming, but they don’t tell the whole story. They can’t sum up the loss of each individual, a life worth living, according to pro-life advocates – and especially to those who know and love people with Down syndrome.

For this pro-life issue of the Catholic Voice, four people agreed to briefly describe their loved one with Down syndrome. Their stories reflect the value and dignity of each person as a child of God.

MONICA SOBCZYK

By Janet Sobczyk

Monica Sobczyk is a cheerleader. Not the kind in a short outfit on the sidelines. She’s the kind who encourages people around her every day. It’s a natural role as the youngest of five, because she tagged along with her parents (Tom and Janet) to every sporting and drama event of her siblings (Carolyn, Andrea, Joe and Peter).

She’s a loud encourager at sporting events, an enthusiastic clapper in the audience, and a comforting presence when someone needs reassurance. She is gentle with animals, babies and especially grandparents. In the final years with her grandmother, when words were hard to come by, Monica sat quietly and stroked Grandma’s hand. She knew better than adults what to do.

When her seventh-grade class began Confirmation preparation, there was concern about adapting for her cognitive delays. Should she be confirmed? The pastor replied, “If anyone deserves the sacrament of Confirmation, it’s Monica. She is a great example to others in church.” True! She loves to be in church, following in the missal, singing, greeting friends and receiving the Eucharist respectfully. At Confirmation her face glowed with happiness!

Now 20, Monica loves music, playing piano, dancing, watching movies and sports (especially Huskers and Bluejays.) She bowls, plays basketball, softball and volleyball. She attends the Transition Program at Madonna School and Community Based Services to learn skills for independent living and for a job. She wants to work in a restaurant or cafeteria someday … serving up smiles.

WALT SNODGRASS

By Denise Snodgrass

The Snodgrass family was blessed with the birth of Thomas Walter Snodgrass “Walt” on October 13, 2003. Walt was born with Down Syndrome/Trisomy 21.

At the hospital they gave my husband and me a book that refers to having a child that is “differently abled,” as though you’re expecting to take a trip to Italy but instead you go to Denmark. Not the journey you were originally expecting, just different. Isn’t that what raising all children is like?!

Walt has definitely been a gift in our family! One word to describe Walt is “joy.” He exudes happiness in everything he does. At a young age he demonstrated compassion for others. We could be walking through a crowded amusement park and if someone nearby coughed or sneezed he would run up to them and say, “God bless you.”

Walt, who just turned 18, is from Omaha. He is a junior at Westside High School, where he is fully included in classroom instruction.

He runs track, plays percussion in the school band and is part of the unified bowling team. He particularly loves being a “Sparkler” and cheering at his high school football and basketball games.

His happy place is at Lake Okoboji, Iowa, where he loves partaking in watersports and boating with his family and friends.

Walt is a staunch advocate for inclusion and devoted to the rights of individuals with Down syndrome. He has modeled in a fashion show before and was thrilled to be GLOBAL’s (Global Down Syndrome Foundation’s) 2020 Ambassador.

This year he was honored to be part of a clinical trial through the Linda Crnic Institution to combat alopecia (a hair loss condition, which is sometimes associated with Down syndrome). Let’s just say he is getting haircuts every three weeks now! His contributions to his family and community, his zest for life, and compassion for others make him beloved wherever he goes.

NATE URBANSKI

By Gina Urbanski

Nate is obsessed with all things Halloween.

He’s also one of the most loving kids I know – and any one of his friends, teachers, coaches or family members could tell you that.

Don’t get me wrong. He doesn’t exactly follow the stereotype of the “always smiling” child with Down syndrome. Nate gets mad about things just like the rest of us, and he’ll make sure to let you know. A good three out of the seven days of the week he wakes up with a scowl on his face, and that’s when I know that getting him ready for school won’t be an easy task. But I’d say that’s true of any 14-year-old in their freshman year of high school. And like any teenager, he’s taught me the virtue of patience.

Nate Urbanski is one of several people with Down syndrome who enrich the lives of their families through their love, faith, joy and other special gifts. COURTESY PHOTO

There are countless other virtues Nate likes to teach me every day. In fact, sometimes it feels like he knows something I don’t know. There are nights when I am up at 1:30 a.m. working on bookwork, stressed about work and the never ending troubles of life, when I hear feet shuffling on the tile behind me. I turn around to see a tired Nate reaching to give me a hug from behind. I’ll ask him, “Why aren’t you in bed?” and he’ll ignore my question, cuddle his face next to mine, and say “I lul lu mama.” Which is exactly what God needed me to hear.

Nate is an extraordinarily smart, talented and loving young man who will grow up to do amazing things.

BOBBY MILLER

By Sister Mary Ann Miller

Sinsinawa Dominicans

On April 9, 1948, a baby boy was born to Fanny and Sam Miller. I was 9 and my sister, Dorothy, was 13. Bobby was baptized in St. Cecilia’s Cathedral, our parish in Omaha.

Not much was known about a chromosome disorder back then. Doctors said he wouldn’t live long. Mom and Dad made a deliberate choice to keep Bobby in their care. We learned more about Down syndrome as Bobby grew. He kept defying the predictions of doctors about how long he would live.

Schools were not equipped at that time to teach children who were physically or mentally challenged. Although a delayed learner, Bobby learned from many sources. He learned from his family, TV and by observing and trying new things. Music had the biggest impact on his life. He entertained himself for hours with music.

As Bobby learned, so did we. We taught him life skills and social skills. He taught us to enjoy life, to be kind and compassionate and to never give up when learning something new.

In the 1960s, Pope John XXIII invited the physically and mentally challenged to receive the sacraments. Msgr. (Ernest) Graham, pastor of the cathedral, assisted us and Bobby received the sacraments of Reconciliation, Eucharist and Confirmation.

When Dad died and then Mom, I wondered how Bobby would handle death. He spent more time in his room, playing quiet music. I would hear him talking. I began to understand this was his way of processing information. I think it was his way of praying.

Bobby began his new life in heaven on Dec. 26, 2013, at the age of 65. He left our family with many wonderful memories and taught us so much about love and life.