My son was denied care because he had Down syndrome. Years later, two baby girls showed me that the system was finally changing — and that our fight had mattered.

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Growing up, my friends dreamed of being celebrities.  They styled their hair like pop stars, plastered their walls with posters, and imagined the day they’d make it big.  I always tagged along, but privately, my dream was different. I wanted to make a difference.  

In elementary school, I sold handmade jewelry during lunch to raise money for causes.  In high school I walked 26 miles, collecting pledges for Muscular Dystrophy. Every Labor Day, while friends and family soaked up the last days of summer, I was glued to the Jerry Lewis Telethon,^[1] awed he could stay on stage 24 hours straight—cracking jokes while raising millions for “Jerry’s kids.” I knew I’d never be the one behind the mic inspiring millions, but I hoped someday I could do something, anything, that mattered for kids in need.  

For years, I wondered if my small efforts mattered.  Then in the most ordinary setting, I got my answer.  

 The lively camper show marked the culmination of the six-week day session. I left work early to cheer on my kids and arrived at the auditorium just as the lights dimmed. The camp director guided me to a seat beside a mother juggling a stroller with two sleeping twins beneath matching pink blankets. 

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., thrusting his fists in the air like a rock star. 

When the lights came up, the mom next to me asked, “Was that your son?”   

“Yes,” I said, still beaming. “That was George.”

She nodded toward her stroller.  “Look, we have something in common.” 

She peeled back the canopy and revealed her twin baby girls—rosy-cheeked, fast asleep, their tiny hands curled into fists. 

“They both have Down syndrome,” she said. “We found out during my pregnancy.  They also have heart defects. Both needed surgery before they were six months old.”

I nodded, my throat tightening.

She smiled tilting her head slightly.  “Have you heard about the program at the Children’s Hospital of Philadelphia?” 

I nodded again, but this time slowly, as she told me more.  

The same hospital.  Similar surgeries. But her babies had received everything Georgie didn’t.  A social worker specializing in Down syndrome had visited her in the NICU.^[2] They were discharged with oxygen tanks, feeding tubes, in-home nursing care—everything he’d needed.  Everything he’d been denied. 

I listened, amazed.  

These two tiny girls, peaceful, strong, and wrapped in pink, were proof.  Proof that the system was changing, that our efforts had made a difference.  

I raced home, heart pounding and hands trembling.

“It’s happening,” I told my Buddy Walk friends. “It’s really happening. The care George should have had is now being given.”

It was a group effort, and I was glad to play my part—thankful for Lizanne, Susan, Ed, Jacqui, and Linda. Together we made that hope-filled change possible.

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^[1] The Jerry Lewis MDA Telethon ran from 1966 – 2010 and raised $2.5 billion. Steven Zeitchik and Deborah Vankin, “Jerry Lewis Ousted as MDA Telethon Host,” Los Angeles Times, August 5, 2011.

^[2] Neonatal Intensive Care Unit