Wednesday
September 18, 2024 
Let me tell you about the great work that the amazing people at Children’s Hospital of Philadelphia’s Trisomy-21 Clinic are doing.
Before I can get to that, though, I need to introduce you to Violet. She’s 3 years old. She’s smart, beautiful, stubborn and sweet. She’s fiercely independent, wildly enthusiastic about life and, as three week-long hospital stays in 2022 will attest, an awfully tough little lady.
Violet is my daughter and she has Down syndrome, also known as trisomy 21. The name denotes the extra copy of the 21st chromosome, and that additional piece of genetic material causes its associated characteristics — cognitive delays, low muscle tone and related health problems — in about one in every 700 babies born in the United States.
It’s a privilege to write about Violet in October, which is Down Syndrome Awareness Month, because it’s something I can do to demystify trisomy 21 and promote the sort of understanding that I believe will secure a more inclusive future for Violet and her brothers and sisters in the Down syndrome community.
That sense of community was everywhere Oct. 8 at Lincoln Financial Field in Philadelphia, as people with Down syndrome and their friends, family members and supporters came from near and far to raise awareness of — and money for — the Trisomy 21 Clinic at Children’s Hospital of Philadelphia.
The clinic has been a lifeline for families like mine, providing evaluations and coordinated multidisciplinary care that encompasses patients’ emotional, behavioral, developmental and neurological health needs.
More than that, it’s a source of information, connection and care.
In June, Violet was asked to be one of CHOP’s dozen or so Buddy Walk “Champions.”
Selected from those who receive services at the clinic, the Champions raise money, share their stories, represent the hospital and the T21 community at CHOP, and take a ceremonial stroll along the sidelines at the Linc with thousands of other walkers.
In the run-up to Oct. 8, we pounded the pavements of Lower Bucks County. Violet’s older brother Luke, 6, worked up a fine elevator pitch he used when he asked businesses to post Violet’s flyer and consider donating. My wife Emily and I held a fundraising night at Texas Roadhouse in Bensalem. (A heartfelt “thank you” to the many friends, family members and business owners that contributed to Team Violet.)
Our efforts were replicated by more than 140 teams, raising more than $250,000 for the clinic.
October 8 was a chilly fall day but warmth and camaraderie radiated from the crowd. Violet, her co-champions and their families and friends shined brightest of all, smiling, laughing, playing, walking, running, pausing only for photo-ops and the chance to dole out hugs, high-5s and fist-bumps.
And I reflected, as I do every October, on this unexpected but wondrous journey Violet is taking us on, and the ways her little life is inspiring us to be more resilient, more caring, more joyful. More like Violet.
Her life won’t be easy. She’ll face prejudices. She’ll encounter people who’ll view her as less than what she is. And, as her parents, our hearts ache at the thought of that.
But my prayer for Violet today is that her story and others like it will touch hearts, change minds and shift old, antiquated attitudes about people with special needs.
And that with each passing October, through the efforts of people like the ones we’ve met at CHOP, we’ll live to see a more-welcoming world for our girl.
You can help. Simply by reading, remembering and sharing this column, you already are.
John Anastasi is Editor-in-Chief of the Bucks County Herald and can be reached at janastasi@buckscountyherald.com.
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