At the Department of Motor Vehicles, Don Kreis took a number and waited to be called up to the desk. When he filled out a form requesting a custom license plate, the woman who reviewed the form paused.
“If you don’t mind me asking,” she said, “why did you ask for this particular vanity plate?” Don had requested what appeared to be a jumble of letters and numbers on his license plate: N1303K.
“When I explained it to her,” he says, “she actually started to cry.”
[Word of Mouth is telling the stories behind New Hampshire's many, many vanity license plates. If you have a license plate with character, send us an email or leave us a voicemail: firstname.lastname@example.org and 603-513-7796.]
Don has a 16-year-old daughter, Rose. She’s in high school, and an avid equestrian. She practices a style of riding called dressage. “It’s like dancing on your horse, and she seems very good at it,” he beams.
Rose also has cystic fibrosis. It’s a genetic disorder in which mucus clogs the lungs, pancreas, and other organs, and has no cure. Eventually, a person with cystic fibrosis dies of respiratory failure--but there are ways to prolong their life.
N1303K is the name of a genetic marker for cystic fibrosis. It’s the gene that Don himself carries and passed on to his daughter, although it’s dormant inside him.
“It affects not only her but it also affects the family,” explains Rose’s younger brother, Felix. Every night, they take 20 minutes to help her through a nightly routine. “And most people think this disease is for her so it's going to affect her. But it's really more than just that. It affects everyone around her.”
When Rose was born, for months her parents didn’t know that she had cystic fibrosis. But they knew something was wrong. Rose wasn’t growing, in fact she was losing weight, a grave sign for a newborn. Don says that doctors, at first, blamed him.
“The first thing they think of is that maybe the parents are doing something wrong.” When it became clear that Don was doing everything the parent of a newborn is supposed to do, “they just started tearing their hair out trying to figure out what’s wrong.”
For months, doctors tried test after test, none of which offered clarity. And then, a medical resident suggested what’s called a sweat test. Cystic fibrosis is caused by a mutation that disrupts the transportation of salt in the body. One side effect is unusually salty sweat, and measuring the salt in a baby’s sweat is the surest way to test for cystic fibrosis.
The results came back quickly. When the doctor delivered the news, Don says it was the only time he had sobbed in front of a stranger.
“She started taking digestive enzymes, in these little pills, and that was what made it possible for her to absorb the nutrients from her food.” Soon after, Rose began to grow normally.
She stayed healthy over the years by following a strict routine. Every night, her family helps her put on a vest-shaped machine that shakes loose the mucus in her lungs. Before that machine was invented, you would have done it by hand, beating on the person’s chest. She also takes an antibiotic that thins out the mucus, making it easier for her to breathe.
Just three decades ago, the life expectancy for a person with cystic fibrosis was 10 years. Rose would likely never have lived to be a teenager. Thanks to medical advances, life expectancy is now around 40 years, and some live even longer.
Even so, her health is precarious. Last year was a particularly bad one for Rose. She was hospitalized with a severe lung infection for a month, which is when Felix says he realized exactly how serious his sister’s condition is.
When Don looks back on the day he found out that Rose had cystic fibrosis, he says his thoughts quickly turned to the future. “You can sit around and feel sorry for yourself or you can kind of lean into the situation that life gives you. And we've chosen to lean into it.” He didn’t want other parents to go through what he went through, the months of uncertainty while his newborn baby struggled and doctors scratched their heads.
Instead he wanted the sweat test to be included in New Hampshire’s newborn screening program, and he testified at the state capital. Lawmakers agreed with him and updated state requirements.
“Now every baby is tested at birth for cystic fibrosis,” Don says. “The diagnosis comes very quickly and there's no more failure to thrive. I'm very proud of that.” Catching the disease immediately at birth has allowed parents in New Hampshire to give their newborns better treatment, avoiding the harrowing early months that Rose endured.
Don recalls meeting a parent at a group for cystic fibrosis families who pulled a picture of her baby out of her wallet, and said “my baby is healthy because of you. So thank you.”
Now, Don and Felix are traveling to Washington, D.C. to lobby for preexisting conditions, including cystic fibrosis, to remain covered by insurance plans. Felix has been practicing his talking points.
“For a lot cystic fibrosis families it can cost one hundred thousand dollars just to care for this,” he says. “I'll probably be telling them how important insurance is.” Felix wants to play baseball when he grows up--but even when he dreams of the future, he thinks of his sister.
“I know baseball players make a lot of money. . . I'll give at least half of the money that I get to the Cystic Fibrosis Foundation.”
Don, when he dreams of the future, is optimistic.
“I really believe that in my lifetime, and certainly Rose’s, CF will stand for ‘cured forever’ instead of cystic fibrosis. Because we're making really remarkable progress,” he says. “It is the kind of disease that you can struggle against and do something about on every conceivable front. There are all kinds of drugs, all kinds of therapies.
“It's all about how human ingenuity can conquer both scientific uncertainty and human misfortune and make life better for everybody.”
Don and Felix head south, to make their case to Congress, in a Prius with the license plate “N1303K.”