In the spring of 2019, I was walking through a Providence, R.I., airport concourse after what had been a very painful, yet rewarding day. I had just bid a final goodbye to Armand LaValle, my pal since we were seventh-graders in Florida, who had courageously battled a cancer that we both knew was going to claim him in just a few hours.
As I walked slowly toward my gate for the flight home to Washington, I was feeling the weight of a sadness that knows no words. I wasn't really seeing any of the people I walked past – until I glanced to my left and saw a young girl whose head was immobilized in a metal brace that extended from the top of her skull to her shoulders. Our eyes met. I smiled at her, reflexively raised my right hand just few inches and gave her a thumbs up.
Suddenly the entire concourse seemed to erupt in illumination – undoubtedly the brightest burst of mega-lumens ever generated by a single source: The little girl had erupted into the biggest, widest, brightest – and (it seemed) happiest – smile I'd ever seen.
Well, I stopped, walked over, and introduced myself to her and the woman with her. And on that sad day when I knew I was just hours away from losing my old friend, I instantly made two new ones.
I met Emmalyn Freeze, who was then 10 years old and (as I would learn) had already endured more than 30 surgeries due to a rare condition that has caused her a lifetime of problems that she has battled with a courage that is absolutely heroic. And I met her mom, Stephanie Freeze. They live what ought to be a quiet, classically middle-American life in the small town of Mount Morris, Illinois. Except that seven years ago, as Stephanie has recounted online, Emmalyn and her two-years-older brother, Colton, were diagnosed with two rare conditions: Chiari Malformation, a condition where a portion of the brain slides downward into the spinal canal and blocks the cerebrospinal fluid from flowing into the spinal cord; and Syringomyelia, where a cyst filled with cerebrospinal fluid forms inside the spinal cord.
Both children had surgery to lift the brain out of the spinal cord so the fluid could once again flow. The operation worked successfully for Colton; he has had no problems since. But as their mother wrote online: "Emmalyn wasn't quite so lucky. Emmalyn had an underlying connective tissue problem and other underlying conditions that should have been addressed (prior to the surgery)...and because her initial surgeon removed too much bone from her skull, the decompression failed and it has caused a snowball effect that has caused her a life of continued pain..."
Emmalyn suffers from unrelenting pain of headaches that can at times be quite severe. Yet she never fails to wear her trademark smile and display her optimistic sunny outlook on life when she is talking with friends and well-wishers. Her reality is heartbreaking to all who know what she is going through. Emmalyn has had 33 surgeries – including in New York City and most recently at Stanford University's Lucile Packard Children's Hospital, in Palo Alto, Calif., where mother and daughter say they have had the highest quality.
After her last operation there, last month, Emmalyn had just one request – she wanted to see and feel the Pacific. "It was amazing!" Emmalyn told me. "But it was really cold!" So she just dipped her toe into the water. Mission accomplished!
Stephanie, now a single mother, is struggling to cope with life's realities that can often seem quite cruel. She had to become a self-educated medical expert so she could understand the crisis her daughter faced on a daily basis, sort through the problematic treatment issues, and find the expert who can finally fix what went horribly wrong.
"My mom always tells me: 'Don't stop, keep going,'" Emmalyn said. "Without mom, I don't know what I'd do or how I'd get through this."
Stephanie Freeze is also candid about the crisis of those unrelentingly costly travels to the Atlantic and now the Pacific coasts. Now mother and daughter must head to Palo Alto again – and they have no idea if they will have to remain there for a month or more.
Stephanie created an online Go Fund Me page and titled it: "Helping Keep Emmalyn Strong" (https://www.gofundme.com/f/EmmalynStrong). But it's really how we keep ourselves strong. Its centerpiece is Emmalyn, displaying the smile that illuminated an airport, enlightened me and bonded us forever. Call it Providence.
About The Writer
Martin Schram, an op-ed columnist for Tribune News Service, is a veteran Washington journalist, author and TV documentary executive. Readers may send him email at email@example.com.
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