- Young Kwak
- Initially inspired by her son's condition, Rebecca Schroeder has continued to support families dealing with cystic fibrosis.
Rebecca Schroeder has a molecule on her foot. Specifically, she has a tattoo of a molecule, a complicated honeycomb of connected atoms, placed under a lightning bolt and cursive script reading "Honor The Gift."
It's the molecule that's saved her son's life.
Schroeder, who lives in Coeur d'Alene, can dive deep into the graduate-level science behind cystic fibrosis. How, when two parents carry a certain gene, it can give their children a one-of-four chance of being born with cystic fibrosis. How that genetic anomaly causes a protein abnormality that screws up the salt-water balance of the cells. How the disease turns the mucus that typically lubricates organs into something thicker — like honey that's too cold to flow easily. How that thickened mucus can cause scarring, clogging up the pancreas, ruining digestion and ravaging the lungs.
To her, the cystic fibrosis science is not just academic. She knows what it's like to freak out after hearing a diagnosis of "cystic fibrosis" two and a half weeks into her son Brady's life, learning that his life expectancy was only 37 years. She knows what it's like to hear her son struggling to breathe while he sleeps. She knows what it's like to spend three hours a day on intensive treatments, to spend a fortune on pills, to sit in waiting rooms during surgeries to correct problems with her son's sinus passages.
But all that lets her know what people like Lori Ullman are going through. Ullman has a 6-year-old niece named Jersey and a 31-year-old sister named Gina, both suffering from cystic fibrosis. Right now, Gina's on the seventh floor at Sacred Heart Medical Center, waiting for a double lung transplant.
Despite all the complication in her own life, Schroeder's been there to comfort Ullman.
"She's always checking in with me, wondering how Gina's doing," Ullman says. "She has us on her prayer list at her church." Schroeder visits Gina regularly in the hospital, says Ullman, bringing flowers and baskets, and the "puppy chow" Chex mix Gina loves so much.
Just knowing that she has a friend going through something similar helps Ullman feel a little less alone. There are plenty of others like Ullman who Schroeder has comforted, advised and supported.
Today, Schroeder's son Brady is a smiling 8-year-old. He has green glasses, loves learning about inventors and playing tag and Super Mario Brothers and building Star Wars LEGO sets.
In one narrow sense of the word, Brady's lucky. He's among the 4 percent of patients with cystic fibrosis with a mutation susceptible to Kalydeco, a drug that essentially eliminates the active symptoms of the disease.
The miracle drug is priced accordingly — $30,000 a month. And the damage done by the disease has left a permanent impact. Every day, Brady still has to take about 40 pills. By now, Brady says, he can swallow six of them at once.
"I just put six of them in my mouth and put water in my mouth," Brady elaborates gamely.
With her son's disease being treated, it may have been easy to just focus on other things in her life.
"Now that Brady is doing so well I feel I have an obligation," Schroeder says. She's guided families through the disease. She's lobbied the state of Idaho to keep its co-pay assistance program. And she's continued to fundraise for the Cystic Fibrosis Foundation.
"I've hosted a golf tournament," Schroeder says. "I've had wine tastings and silent auctions and yard sales and bake sales."
The vast majority of the money raised by the Cystic Fibrosis Foundation, according to Charity Navigator, goes into financing research and assisting families.
"When I run into another family, that tells me that the contact I had with them helped them and gave them hope," Schroeder says. It helps make all the exhaustion — the flood of struggling families in her Facebook feed — worth it.
For 18 years, Ullman had chaired the Great Strides walk for the Cystic Fibrosis Foundation. But after Ullman's sister was hospitalized two years ago, Schroeder took over that responsibility, Ullman says. Last year, nearly 400 walkers at the event raised almost $70,000.
"It seems that this was her calling. She was meant to do this," Ullman says. "As much as you would never wish this upon anyone, it's like it was meant to be." ♦
Position: National advocacy co-chair, patient engagement advisory councilmember and Spokane "Great Strides" walk chair for the Cystic Fibrosis Foundation; Patient and Family Advisory councilmember for Sacred Heart Medical Center
I give back because... "so many have given so much to us. My son is healthy today because of what others have given. And we're determined to see a cure for cystic fibrosis."
I look up to... "Dr. Bob Beall, the CEO and president of the CF Foundation, who has led the foundation for the last 35 years. I consider him my hero. He has made so many decisions that have impacted Brady's future. I don't know where we'd be without his leadership."
I wish the Inland Northwest were better at... "connecting patients. It's so hard with [patient privacy laws]. The other day I ran into a tennis pro at my gym who had cystic fibrosis, but I had no idea. I crave those connections, and it's hard to know who right here in our own community [has cystic fibrosis] — unless they come out to a fundraiser or I happen to run into them in the hallway at a clinic or something — I wish there were a better way to connect families together for support."