Martin Schram

It is 1:30 p.m. on New Year’s Day. Emmalyn Freeze, who at 14 is a veteran of 54 surgeries on her brain and spinal column, had been hoping for a happy holiday at her rural Mount Morris, Ill. home.

But now she is stretched out in the fully reclined front seat of her single mom’s charcoal SUV. She has one ice pack behind her head. Another covers her eyes, which are weeping. Between her ice packs, Emmalyn, who usually takes things in stride, tells her mom, Stephanie, something unusual about her pain: “It’s 10 out of 10 extreme!”

The single mom stays steady at the wheel, but she will later admit she was feeling quite nervous as she headed north up the interstate toward the quality emergency room that’s an hour and 40 minutes away, at University of Wisconsin’s children’s hospital in Madison.

You may think the family’s trusty Jeep probably knows that route by heart by now; but it has every reason to be confused. After all, the Freeze family has criss-crossed America by car for surgeries in some of the finest hospitals from New York to California, and most recently, to Duke University in North Carolina.

Which, for our purposes today, is another way of saying: The Freeze family vehicle has been driven from the eastern edge to the western edge of a huge (but often-overlooked) hole in America’s health-care system that Stephanie Freeze has found herself trapped inside for too many years. Today we are looking at their story as a way of finally getting a clear view of just how easy it ought to be to fix that problem by getting rid of that unfair and downright inhumane hole.

Stephanie discovered that Emmalyn and her brother Colton, who is two years older, suffered from a rare congenital health disorder – Chiari malformation, in which part of the brain protrudes through an opening into the spinal column. Emmalyn later was diagnosed with several other rare disorders: adhesive arachnoiditis, Ehlers-Danlos syndrome, tethered cord syndrome, plus a series of infections, spinal-fluid leaks, and problems with surgically inserted shunts.

Think about all that: For every operation and treatment, Stephanie and Emmalyn (and often Colton too) had to go to a hospital in a distant city, and then after the procedure, remain nearby – often for weeks – for frequent examinations to assure success. When that happens for children with major problems that are well known, such as cancer, there are many financial and living assistance programs for the ill child’s families. Among them: the excellent widespread Ronald McDonald House programs that offer living accommodations to families of children with cancer.

But families of children with rare disorders often find there are no programs available offering free or vastly discounted living facilities and meals. Stephanie found herself trapped in that hole – having to eat in restaurants and stay with Emmalyn and Colton in discounted hotels that still cost almost $100 a night.

You may remember the story of how we met – it was a made-for-Hollywood kind of moment that I wrote about in a July 2020 column. I had gone to New England and said goodbye to my childhood friend, Armand LaValle, who was just hours away from dying of cancer. Then, walking sadly through the Providence, R.I. airport concourse, I saw a young girl whose head was immobilized in a metal brace that extended from her skull to her shoulders. I smiled at her and gave her a thumbs up. She erupted in a smile that seemed to light up the entire airport. I walked over and met Emmalyn and her mom, Stephanie.

Ever since, I have watched that courageous single mom struggle to raise money through donations just to provide for her family’s basics while they followed the medical advice of some of the most highly respected surgeons and other physicians. Last week, Emmalyn’s world-renowned surgeon at Duke studied the imaging done in Wisconsin this past week and has recommended no more surgeries now, but treatment at a neurological and chiropractic pain control institute. To fund that treatment, Stephanie has set up a new donation website: Emmalyn’s Journey: Reaching for a Pain-Free Future (emmalyns-journey.com)

Meanwhile, Washington’s political leaders, back on the job after rediscovering the spirit of holiday humanity at home, can start now by jointly embracing a very similar spirit of family-oriented problem-solving.

Perhaps the spirit of Emmalyn’s Journey can inspire Republicans and Democrats to unite behind incentives that encourage institutions and private enterprise to provide mere room and board basics that can finally help thousands of desperate families who feel trapped by realities of rare health disorders.

And who knows? If Republicans and Democrats can unite to help families help their loved ones fight to live, perhaps Washington’s pols will remember how they used to actually live with each other.

Martin Schram, an op-ed columnist for Tribune News Service, is a veteran Washington journalist, author, and TV documentary executive. Readers may send him an email at [email protected].