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How a Boy with Down Syndrome Inspired a Grassroots Movement

When, George, was a rising fifth grader, his summer activities included swim team, family dinners, and laughter at day camp. The camp’s six-week session ended with a lively camper performance. I left work early and made it to the auditorium just as the lights dimmed. The camp director quickly guided me to a seat beside a mother juggling a stroller with sleeping twins. The show was perfect; I beamed with pride watching George (11) and Liza (8) perform—Liza, sweet and focused; George, full of flair as he belted out his favorite song, AC/DC’s T.N.T., alongside his friends.

When the lights came up, the mom next to me asked, “Was that your son?”  Proudly, I said, “Yes.” 

“Look, we have something in common,” she said, introducing me to her four-month-old twins, who, like George, have Down syndrome. They looked like tiny miracles—bright-eyed, rosy-cheeked, and clearly thriving.  She disclosed that during her pregnancy, she learned her twins had both Down syndrome and congenital heart defects that would necessitate surgical intervention between the ages of three and six months.  She asked, “Have you heard of the Center at the Children’s Hospital of Philadelphia?” 

As she spoke, I felt a lump rise in my throat. Her daughters were treated at the same hospital where George had fought for his life as an infant—and they had received state-of-the-art care. A social worker specializing in Down syndrome had visited her in the NICU. Her babies came home with oxygen, feeding support, and in-home nursing care to help them grow stronger day by day—exactly the kind of help we begged for but never received.

I listened, stunned.  What she shared was everything we’d once needed.  Then I raced home, heart pounding and hands trembling, to share the news with my Buddy Walk friends: It’s happening. The care we fought so hard for—what George should have had—is now being given. These beautiful twins were living proof that the system was changing, that our voices had mattered.

I began this journey with only my questions and my fury. I didn’t know how to speak the language of the NICU. I didn’t understand why the doctors didn’t offer solutions while he struggled to eat and breathe—despite all the harrowing trips to the ER and terrifying crash-cart interventions.  Was he receiving less care simply because he had Down syndrome?   Alone, tired, and afraid, I coped by raising money for doctors who shared my dream of better care for all with Down syndrome.

Eventually, I recognized real change couldn’t come from one voice alone.  I was blessed to find five parents who shared my passion, turning my cause into our cause—mothers and fathers who had also walked hospital hallways, wondering if they were the only ones. Together, we asked new questions, demanded better answers, and dared to imagine more for our children.  We created a grassroots Buddy Walk to celebrate their lives and fund a new Down Syndrome Center at the Children’s Hospital of Philadelphia. It had all started with one little boy struggling to breathe—and now, others could breathe easier because of him.   

My memoir, Every Buddy is Gold, tells how six parents came together to make that incredible hope-filled change

possible.