EDITOR’S NOTE: This Saturday is a rare event, Leap Day. It is also Rare Disease Day, an international campaign to raise awareness about the 7,000 under-the-radar diseases that individually affect few people but, as a whole, affect more than 1 in 10 Americans.

On my daughter’s birthday last year, I drove several hours to visit her at college. I brought her the local vanilla-bean glazed doughnuts she claims are “the best” along with several assorted goodies from home. We then spent most of our afternoon chatting and watching reruns of Friends while we waited for her latest five-hour drip of IV medication to finish.

For all but the first two of her 19 years, my daughter has dealt with juvenile dermatomyositis, an incurable autoimmune disease that affects muscles and blood vessels. Just three in a million children are diagnosed with it, so you probably have never heard of JDM before. Not even if you know my girl. Outside of our family and the phalanx of doctors and nurses who have treated her through two decades, she barely talks about her condition, especially not with her friends and classmates. It’s rare a child wants to be seen as different from her peers, and that is no different for a child battling a rare disease.

Someone else, though, has given a voice to people like my daughter.

Not long after our indulging in carbs and Chandler Bing’s antics, legendary rock guitarist Peter Frampton announced a farewell tour. The 68-year-old, best known for his 1970s megahit album Frampton Comes Alive, told the world his pending retirement is being hastened by inclusion body myositis, an adult variant of the rare disease my daughter has that is even less treatable and more damaging than her condition. It, too, has no cure.

IBM, as it is called for short, is a degenerative illness. It progressively weakens and lays waste to major muscles in the arms and legs. Worst for a skilled guitar player, it eventually affects strength and dexterity in the wrists and fingers.

Someone’s diagnosis with an incurable disease is never cause for celebration. However, Frampton’s prominence and openness with media and fans about his battle excites certain people. These are the doctors, researchers, caretakers and patients who have spent a significant portion of their lives dealing with or dedicated to conditions few others know about.

“I can’t begin to tell you how extraordinary it is and how generous it is on his part to reveal this,” Frampton’s doctor, Lisa Christopher-Stine, director of the Johns Hopkins Myositis Center in Baltimore, told the Global Genes website. “With rare diagnoses, we are all struggling to gain recognition for them in the public sphere. His disclosure brings potential funding, awareness and support. Not every disease has a celebrity spokesperson for it, but when it does, it accelerates progress exponentially.”

In addition to going public about the potential devastating effects of his disease, Frampton established a research fund bearing his name at the Hopkins center, one of a very small handful of medical facilities dedicated to these illnesses. One dollar from every ticket sold on his final tour will go to the fund, which is expected to receive many additional donations at a steady pace from fans, peers and many others during that June-to-October run, a Hopkins spokesperson told me.

As Frampton said about his diagnosis in a recent interview with CBS This Morning, “Look, it’s not life-threatening. It’s life-changing.” For my family, especially for my daughter, I hope his championing of the cause of myositis research does change many, many lives for the better. Her mother and I have spent much time and effort raising money and attention to the disease and its need for better treatments the past decade or so, but it will surely be a fraction of what a respected superstar like Frampton can bring the cause.

In the meantime, my daughter continues improving after the latest flare of JDM, a condition that once made it impossible for her to walk and almost impossible to swallow when she was a toddler. Her doctors are looking at tapering some of the many meds they had to reintroduce to her regime; she is looking forward to a spring season on her college’s tennis team. And, despite the many appointments, pills and IVs, she pretty much goes about her day as if she was any ordinary 19-year-old and not the rarity she really is.

Photo: Kevin McKeever

The free-range parenting debate ignited by children wandering around neighborhoods and on subways by themselves brought an interesting conversation to Facebook the other day. The big question is: Why?

Why are we so paranoid about our children exploring by themselves or looking after their younger siblings. That’s not how it was in the old days. The rule used to be “come home when the streetlights come on.” My response was it has something to do with the loss of our neighborhood networks, social isolation, and lack of community policing. Yet another way to go was that we live in a more dangerous world.

But here’s the thing with that, we don’t. If you look at crime rates, they’re down. Across the board. Murder, violent crime, property crime. Yes, there are more people now. But the crime rate itself is pretty much back to where it was in the 1960s after a spike from the 1970s to 1990s. You can blame the news cycle for the constant stream of negative world events. It feels bad even if we’re living in a time of relative peace and safety. It’s easy to point to the horrors in Syria, Ukraine, Africa and think we live in dark times. But really we’ve made a lot of progress.

And that got me thinking about what it’s like to be a parent in a wider context. Do we live in a “Golden Age of Parenting”? Not saying we’re the best parents who have ever lived in all of humanity. There are clearly exceptions and our kids clearly face obstacles. The shrinking middle class. The education gap. Problems finding jobs. Problems paying for education. The healthcare system is still broken despite efforts to reform it. Blah blah blah.

That’t not my point here. My parenting point is twofold:

1. We tend to judge “bad” parents by their deviation from the commonly available network of family-related opportunities.
2. Those family-related opportunities are, generally, wider and more readily accessible than at any other time in human history.

The easiest way to illustrate my point is vaccines and the debate over them. We live in an age where most childhood diseases that would have otherwise killed thousands just a few generations ago have been eradicated. Those diseases are making a comeback not because we lack technical or medical know-how. They’re back because a few people have deviated from the Golden Age of Parenting mainstream.

You can apply the same premise to almost any topic. Despite ongoing issues, we live in a time when education around the nation is perhaps the best it’s ever been. We still have huge problems with poverty, but today’s low-income problems are not the same in absolute terms as just a century ago. Think of a poor child in 1915. That’s World War I. Here in Chicago the immigrant neighborhoods were … a good word is “festering.” Today’s crime, drugs, and incarceration are, relatively speaking, improved. No excuse to call it quits, obviously. But my point here is: progress.

Dads no longer are trapped in the factory or office and can spend time with their children. Moms can have careers and are no longer socially forced into staying home. We’ve made strides with gay rights, adoption, race, gender, religions, and we can network with people around the globe. This serves as a counter to that neighborhood isolation in the beginning. We may be physically isolated, but we’re connected by technology like no time before.

We often fight back against our tech gods these days and it’s fashionable to dismiss technology as evil or somehow ruining us. But that same technology also lets us send photos of the grandkids, instantly find strange animal facts, telecommute to our job so we can spend more time with our children, and whatever else we can dream up. Just yesterday my 3-year-old daughter wanted to see photos of neurons under a microscope. Kids in 1915 weren’t asking to learn about brain chemistry while snuggling with their dads on the couch.

If you asked me what era of history I’d like to be plopped down in to parent two children and generally live a decent quality of life with great freedoms, tolerance, education levels, lack of disease, and overall happiness, the 21st century would be a pretty prime candidate.

This is a good time to be alive. And probably the best time ever to be a parent.

A version of this first appeared on Newfangled Dad.

“Argh, Aaargh, Mmmh.”

“Daddy, what is that?” I remember the sweet voice of my almost 4-year-old son in the back seat of the car last week. It was the first time he verbally responded to my vocal tics.

“Oh … nothing”, I said.

Nothing. Is Tourette syndrome nothing? Not to me it isn’t. The years of torment from schoolmates and perfect strangers who misunderstood my tics weren’t “nothing.” The years of having to make an announcement whenever my vocal tics appeared in public weren’t “nothing.”

“Please don’t mind that everyone. I have Tourette’s.”

I should be used to it by now. I was diagnosed at the age of 11 and I’m now, what … 42? The memories never fade or get easier to cope with. I’d better tell him.

“I will have to tell him eventually,” I whispered to my wife, who was driving seat. “Do I tell him now?”

“Be rational,” she said. “You’re going to explain Tourette’s to a 4-year-old little boy?”

She was right. At least it gives me some time to figure out how to explain it to him, what to say. How to break the news to my son that Tourette’s is hereditary and that if he doesn’t have it, his kids probably will? He’ll resent me.

“Fuck!” I shouted. Yet I couldn’t blame it on my Tourette syndrome this time. My particular case doesn’t give me the compulsion to shout obscenities. That was me being angry.

“Language,” she chided. “He’s still hears you.”

Explaining Tourette syndrome to a child

“When do I tell him?” I asked.

“He’ll be old enough to understand on a basic level in a couple of years,” she replied. “But don’t worry, he’ll be fine with it.”

“Do you think he’ll be embarrassed to have his friends meet me when he’s older?”

“You’re overthinking it, sweetheart, he’ll love you. Nothing will change.”

“How will I explain it to him though? I know I can’t say, “Daddy has a genetic neurological condition called Tourette’s syndrome that causes him to make involuntary muscle twitches and vocalizations called tics.”

“You’ve done it before.”

“When did I tell him?”

“Not our son, you goofball. Carly, my god-daughter. How did you explain it to her?”

That’s right. Four years ago my wife’s god-daughter noticed my tics at brunch in New York City. It was the first time I have ever had to explain Tourette’s to any child. She was 6 years old at the time and asked why I made “those noises.”

I remember asking her, “Can you stop yourself from sneezing?”

“No,” she responded.

“Well, sometimes I make sounds or twitches and I can’t stop it. Just like a sneeze.”

“Oh,” She said. “Does it hurt?”

“No. Not really,” I reassured her. “It’s nothing to worry about.”

“Are we all together now?” my wife asked her.

“Yes.”

“Are we all having a good time?”

“Yes.”

“Does Jason seem different now that you know this about him?”

“No.”

“Well. You’re right. I’m not different,” I remembered saying proudly.

“I’m still the same. You’re still my friend and I am yours.”

I remember feeling relieved. I’ll tell my son the same way I told her and he will still love me. The fact that I have Tourette syndrome won’t change our relationship a bit. And the possibility he might have it? Well, that won’t change a thing either. He loves me and he knows I love him. As it should be.

Resources for parents and children with Tourette Syndrome available via the Tourette Association of America.