Donald Kreis is a nerd, and he knows it.

“Yes, I am,” he said recently.

He began wearing a bow tie in junior high school and wears one today, at age 64. He never played sports in school, always got good grades, was the editor of his high school newspaper and was the president of the radio station at Middlebury College.

These days, he’s New Hampshire’s Consumer Advocate for the state’s residential utility customers, explaining their side before the Public Utilities Commission.

Needless to say, Kreis is gentle and articulate, and he’s not going to engage in a bar fight anytime soon. He will, however, get tattooed, far more than lots of Hell’s Angels do, if he meets a monetary goal.

He’s trying to raise $650,000 by the end of the year to fight Cystic Fibrosis. His daughter, who’s 24, has it, an inherited disease that interferes with respiratory, digestive and reproductive systems.

If he raises the money, wonderful. Cystic Fibrosis may inch closer to what Kreis calls his “quest of reducing this genetic disease to a medical footnote.”

Once the threshold is met, he insists he’ll get tattooed. Sixty-five of them on his legs. All roses. If he falls short, then no ink. 

Kreis has set up an online fundraising page to collect donations and show progress toward his goal. 

The clock is running

“I have six months to do it,” Kreis said from his Concord office, which houses his staff of six. “My brain operates as a win-win, because I’m not sure I really want to go through that process of getting my body covered significantly with rose tattoos.”

He continued: “But if I can reach that prodigious sum of money, I would be happy to have my body covered in roses. If I make it, I’ll be famous, and I like the attention.”

He’s got it. The ingredients here are unique and fun. First off, why, you might ask, roses?

Because in 1965, a 4-year-old boy suffering from the disease heard adults mention, ‘Cystic Fibrosis.’

In the kid’s mind, Cystic Fibrosis sounded like 65 roses. The name stuck, an unofficial reference used by anyone revolving around the disease’s orbit.

These days, there are 65 Roses calendars, tote bags, even road races.

And now, this, a permanent mark, offering hope, if it indeed happens.

65

Kreis’s 65th birthday, of course, is July 24. He says that’s the perfect age to get tattooed. He’s not worried about the ink wrinkling with age.

“I am someone who has noticed that tattoos are very popular,” Kreis said. “If you’re 18, how will you know that you’ll still like it at 65? That makes me the perfect person to do this. I am already old.”

Next, his daughter’s connection to this drama, a coincidence of behemoth proportions. She was named Rose, Kreis said, well before 65 Roses surfaced.

She was named after a favorite aunt, who loved a certain fictional character in the blockbuster movie, ‘Titanic.’

A beautiful flower

“I can confirm” his daughter, Rose Keller, said by phone. “Super funny and coincidental that they named me Rose. It had absolutely nothing to do with (Cystic Fibrosis) and absolutely everything to do with an aunt of my dad’s and the (movie) ‘Titanic.’”

Rose was born five years after Kate Winslet made the character famous. She stopped growing quickly and was diagnosed with Cystic Fibrosis at five months old. Successful treatment followed.

Kreis campaigned successfully to add the disease to the list of illnesses screened at birth. He brought a pulmonologist to the Legislature to help bolster his case. All 50 states now check.

“I did not want other families to suffer like Rose did,” Kreis said. “New Hampshire was one of the early states to add it to the newborn screening program. They can be diagnosed at birth, and the sooner you get treatment, the easier it is to put off permanent damage to your lungs.”

The mutation of a certain gene affects cells in the respiratory, digestive and reproductive systems, producing a sticky mucous that clogs airways and passageways and allows harmful bacteria to hide.

Just three decades ago, the average person with cystic fibrosis might live until 30. Nowadays, 50 is typical and 80 is not out of the question.

Rose has lived a full life and expects to be around awhile. She competes in dressage and writes for a dressage magazine. She says one day she’d like to try out for the National team and compete in the Olympics.

She’s studying politics in a fellowship in Washington, D.C. and plans to return to Bowdoin College for her junior year.

Through the years, Rose took advantage of medical breakthroughs and stuck to a plan that kept her relatively healthy.

Instead of joining friends, she might sit on her couch for two hours with a nebulizer, breathing in medicine to relieve congestion.

“I currently feel very healthy,” Rose said. “My care team emphasized doing my treatments and being diligent about my health. The only reason I feel this good is because I sacrificed my time.”

She spent time in the hospital during her school years, a few days here, a few days there, a longer stay once in a while, up to two weeks.

“When I go to the hospital,” she said, “it’s because I need a course of IV antibiotics to kill the bacteria in my lungs. The antibiotics frequently come with adverse side effects and increased risk that require close monitoring.”

A rose is a rose

Then, an idea. “Dad came up with a scheme,” she said.

Their relationship is based on humor, like two old friends playing tricks on one another and laughing through life.

At first, Kreis set a goal of $65,000.

Rose had other ideas.

“He told me and I laughed,” Rose said. “It was very funny to me, so I told him to go for it, but he listed $65,000. I’m not saying $65,000 is not compelling, but over half a million dollars would be impressive. I told him he was setting the bar too low.”

He’s already searching for a tattoo artist, in case he needs one. Meanwhile, Rose said she’ll get a good laugh if her father ends up with hearts all over his legs, permanently.

She laughs a lot. When you have a dad who puts his head on the chopping block in this fashion, there’s bound to be a lot of laughter around the Thanksgiving Day table.

A dangerous disease infiltrated their home 21 years ago. Medical science, however, continues to counter-attack aggressively, with new medications and treatments emerging often. Rose expects to live like the rest of us, and her father is enjoying the ride.

“Rose’s miracle is still in the future,” Kreis said. “That makes me particularly invested in this. I am convinced (a more effective drug) is inevitable. Maybe in five years there will be something more.”

By then, Kreis could have 65 tattoos running up and down his legs, perhaps changing his image a tad. Tougher? Badder? Cooler?

“No, Rose said. “He’s a big nerd.”

Editor’s note: This story has been changed to clarify that Kreis pl ans to get 65 rose tattoos only if he meets his $650,000 goal.

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