The only way you might know something is different about smiling, energetic, wavy-haired 4-year-old Mason Lampert is by tasting him.
His skin is constantly salty, like “a little potato chip,” says his mom, Stacy Sadlo-Lampert.
Mason has cystic fibrosis (CF), a genetic disease in which the organs of the body—particularly the lungs and pancreas–become lined with thick, sticky mucus.
When the pancreas becomes clogged, it’s unable to secrete enzymes necessary to break down fat and protein, which results in malnutrition. Mucus also can clog the lungs and cause serious respiratory problems.
But thanks to his care team and support from the Cystic Fibrosis Center at the University of Minnesota, Mason is not just surviving—but thriving.
He is animated, active (especially with karate) and loves his iPad. The only real physical indication of his cystic fibrosis is the saltiness of his skin, because his body can’t readily absorb it.
“The education I give to parents, first and foremost, is that CF patients are normal little kiddos,” says Carlye Tomczyk, a nurse practitioner at University of Minnesota Children’s Hospital.
“There are special things he has to do every single day for the rest of his life but, other than that, it won’t limit him in any way from being in sports, dating, getting married someday—we need to fit CF into life, and not the other way around.”
Mason was just five days old when his parents, Stacy and Grant, got a phone call every parent dreads.
“The pediatrician called and said, ‘I have some news. Is your husband there? I need to have you on speakerphone,’” says Stacy. “Of course, your heart stops.
“Mason has two recessive genes that cause CF, because my husband and I are both carriers—and we had no idea,” she adds.
“Your first thought is, ‘What did I do wrong?’ But you realize that, unless you have family members with CF, which we don’t, you wouldn’t have a clue that it runs in your family.”
Within 24 hours of the first phone call, Stacy and Grant had an appointment with a cystic fibrosis team at University of Minnesota Children’s Hospital.
From their first visit to the children’s hospital, the Lamperts knew they’d come to the right place.
“The great thing is, you have a whole team behind you,” Stacy says.
“Carlye was has been with us since that first visit. There’s also a dietitian, nurse coordinators, a respiratory therapist, a social worker, a child psychologist, the lab team—it doesn’t matter who you talk to, they’re all willing to help and get to the bottom of things.”
Carlye believes Stacy and Grant’s attitude is just as important to Mason’s health as the advanced medical treatments he gets at the hospital.
“The Lamperts have always been a family that just sort of takes things in stride,” Carlye says. “Those children tend to do quite a bit better because their families don’t treat them as a sick child, just a child.”
Mason keeps his CF in check by taking a special blend of enzymes with each meal to help his body break down food, maintaining an active lifestyle and undergoing twice-daily sessions with nebulized medications and an airway compression vest.
Originally developed by Warren Warwick, MD, University of Minnesota professor and founder of the Minnesota Cystic Fibrosis Center at the University of Minnesota, the vest cycles through a series of pressures, frequencies and vibrations to help “clear the gunk” from Mason’s lungs.
Quarterly, Mason visits the Minnesota Cystic Fibrosis Center for testing.
His family also attends an annual conference at the Minnesota Cystic Fibrosis Center and the Cystic Fibrosis Foundation Great Strides walk each May to raise money for CF research. This year, Mason’s family raised more than $3,000.
Stacy says the support they’ve received is good—not just for Mason, but for herself.
“The Fairview family gets it if I need to leave a bit early to take him to an appointment or if I work through lunch so I can leave earlier,” says Stacy, a physical therapist at Fairview Southdale Hospital.
“I have some flexibility, and there are not many hospitals that would offer you that.”
She adds, “It’s a huge thing, to have Fairview and the University in our backyard, but I don’t know if people understand their quality of care or the standards those teams hold themselves to.”