Laura Bonnell had a translator, because the parents in the room were mostly poor, and it’s typically the wealthy in Egypt who speak English.
When the screen filled with a picture of her daughters, though — her strong, beautiful, living, 27- and 25-year-old babies — there was no need for words. The universal language was tears.
Molly and Emily Bonnell have cystic fibrosis. The best guess when they were born was that they might see age 15, a figure now wildly obsolete. In Egypt in 2022, in a nation that’s only beginning to battle CF within its borders, the number is 8.
“I understand you’re scared,” Bonnell told some 60 anxious families last week. “I’m scared every day.”
But Molly has two prestigious degrees in design and she’s working for a nonprofit in London. Emily earned a marketing degree from Michigan State and she’s working and thriving in Detroit.
They take special vitamins and enzymes every day. They take precautions. Emily’s IV pole is still standing in a corner of her parents’ living room in Royal Oak.
Look at them, though, said Laura Bonnell, at a university hospital in Cairo. They’re not just alive, they’re racing full-tilt toward their dreams.
From the airwaves to activism
If Bonnell’s name seems familiar, so will her voice. She spent more than two decades as a reporter for WWJ-AM (950) and WJR-AM (760).
In 2010, she created the Bonnell Foundation as a guidebook — and sometimes a checkbook — for parents of CF patients. The last few years, she has devoted herself to it full time.
She went to Egypt on her own dime with Samya Nasr, the University of Michigan pediatric pulmonologist who has kept the Bonnells sane through their inevitable periods of doubt and panic.
Born and educated in Egypt, Nasr returns often, bringing equipment and expertise. She has spent her sabbatical helping doctors there understand the disease and learn to use what resources they can muster.
Nasr thought Bonnell might offer a useful perspective. More than that, she discovered, “Laura brought hope.”
As for Bonnell, she came away with a renewed appreciation for how good the U.S. health care system can be when it’s not being infuriating. Along with that, she found herself questioning why health and life expectancy have so much to do with geography.
Then she flew home and spent five nights in the hospital. Race-walking through the Cairo airport after Air France juggled departure times, she aggravated a five-month-old knee replacement and wound up with an infection .
She’d gladly do it all again, no matter the temporary limp. The hugs, the smiles, the gratitude …
“Truly,” she said, “this was the highlight of my life.”
Old photos, new drugs
Cystic fibrosis is a genetic disorder that mostly affects the lungs, but doesn’t always stop there. The pancreas, liver, intestines and kidney can also struggle when bodily secretions that should be thin are instead thick and sticky.
In the Bonnell household, the disease has also caused unapologetically excessive photography.
Photos of the girls cover the wall above the mantel and the wall across from it. “If they’re going to die young,” Bonnell decided early on, “we’re going to have pictures.”
Birthdays have been particularly buoyant celebrations, and as Molly and Emily churned past milestones, medical science came through with improved therapies and drugs.
New figures from the Cystic Fibrosis Foundation put the number of diagnosed cases at 40,000 in the U.S. and 105,000 in 94 countries worldwide, up from 30,000 and 70,000. The increase, said foundation president Michael Boyle, “is progress. People with CF are living longer.”
In the U.S., the average life expectancy has risen to 42 to 50. Nasr expects the Bonnell sisters to hit 60, and who knows what medical marvels will come along before then.
In other spots on the globe, however, the outlook remains bleak.
Making a disease visible
Laura Bonnell is an Ashkenazi Jew, a group at elevated risk for cystic fibrosis. Her husband, Joe, a commercial lender, is of Irish descent — and Ireland has the highest rate of CF in the world.
It makes some statistical sense that Molly and Emily are afflicted. In Egypt, Nasr has found, there is pushback against the very notion that CF might be a problem.
Testing remains spotty, Nasr said, and insurance coverage is insufficient, meaning medications and accessories like the $20,000 vibrating vests that help clear chests of mucus are hard to find or afford.
“The Ministry of Health doesn’t know the magnitude of the disease,” she said. “To be officially recognized in Egypt, we need to have the numbers. We need to show them how many patients we have.”
Bonnell and another traveler each packed one of her girls’ old vests in a suitcase, the quietest way to bring them into the country.
Meantime, Nasr worked with eager Egyptian doctors, and Bonnell and UM dietitian Stacey Fogarty-Brown spoke to physicians and parents about making do with what was available rather than waiting for supplies that aren’t.
“I’ve never seen happier doctors,” Bonnell said, or more eager, attentive parents.
Nasr met a mother who had lost four children to CF and was trying to save a fifth. Swarmed by families, Bonnell met a 7-month-old who weighed 7 pounds and and another 7-month-old whose mother’s only question, through the translator, was, “Is my son going to live?”
Yes, Bonnell said, hoping it was true. The mother hugged her and she hugged back, fiercely, another connection that needed no words.