Once you learn about Seth Cook's battles, you might think every day of his life would be a brutal uphill climb.
But Seth would say he's having too much fun to complain. He considers himself the luckiest kid in the world, with great parents and the coolest dog around.
No matter what the obstacle, Seth seems to find a way to pick himself up and keep coming back for more.Above all, this is a boy in a hurry. There's no time to waste. For Seth, life is too precious: a non-stop joyride that could end anytime.
Kyle Cook, Seth's father: All three of us know it's inevitable, it's gonna happen. We just have to be as ready as we can be for it.
Patti Cook, Seth's mother: I do believe that God chose us to raise Seth. I don't think this was an accident.
Seth's mom and dad, Patti and Kyle, were off-and-on high school sweethearts from the tiny logging town of Darrington, Washington.
Patti: It took me moving away to realize that he couldn't live without me. (laughter)
When she returned to Darrington, they started dating again. Then in 1992, they got married and not long after, Patti got pregnant. It was something she discovered on her 21st birthday.
Rob Stafford: Happy birthday.
Patti: Oh, yeah. It was the best birthday present I'd ever gotten.
Kyle, an avid outdoorsman, was desperate for a son and on July 22, 1993 he got his wish. Seth Anthony Cook arrived with blond hair and blue eyes.
Patti: He looked like a really healthy baby boy. He had good coloring. He just was a cutie.
Stafford: So you two have everything you want?
Patti: Yeah.
Seth was the picture-perfect baby-- or so his parents thought.
Stafford: What was the first sign that something might be wrong?
Patti & Kyle: By three months, we were starting to get concerned.
Seth's skin started to tighten. He was losing his hair, and he couldn't gain weight, despite a hearty appetite.
Kyle: We had grandmas and grandpas trying to help put weight on him, too. It wasn't working. Nothing was working.
Doctors in Darrington and elsewhere were baffled. Then, before Seth's second birthday, they got an answer. But not the one his parents wanted.
Patti was home alone when the diagnosis arrived in the mail.
Stafford: What did the letter say?
Patti: The letter said that it's progeria.
Stafford: Progeria.
Which meant Seth would never grow up. He would just grow old at an astonishing rate.
Victims of progeria essentially have the bodies of 70 and 80-year-olds. In many ways they resemble their own grandparents more than kids their own age.
They face the same serious health risks as their grandparents: Catastrophic heart attacks and strokes that can happen anytime. It’s an extraordinarily rare disease. There are only about 40 diagnosed cases of progeria in the world today.
Back in 1995, when Patti read the letter disclosing Seth's diagnosis, it laid out a bleak future:
"Heart disease, thinning of the skin, loss of hair and loss of bone strength occur in childhood or early teenage years- currently we have no way to halt these changes."
Stafford: And you're sitting there at home...
Patti: By myself with this letter.
Stafford: What is that moment like?
Patti: I was in shock. It had to be the loneliest moment I think I'd ever had. You know I thought this wasn't gonna end well.
Stafford: Do you feel like just going into a corner and crying?
Patti: Well, I think I did a couple of times.
For support, Patti and Kyle sought out the Sunshine Foundation, an organization that grants wishes to sick children. In 1995, Seth and his mom and dad attended Sunshine's Annual Reunion for Progeria kids and their parents, the real experts on this disease.
Kyle: We got more information from other parents than any doctor could ever tell us.
Stafford: How did you feel these children looked?
Kyle: They looked aged.
Patti: Weak. It was hard to look at the older kids and see what tomorrow had in store for us.
But Seth has made it easier for them, just because of the kind of kid he is.
Patti: He was no different than anyone else in his own eyes-- in his own mind. He was really
eager to learn things and he wanted to go. He was ready to go a hundred miles an hour everywhere. He learned to walk before he could crawl.
Stafford: So right away, Seth is a boy in a hurry?
Patti: Yes. Ready to go.
Stafford: Do you think there's a reason for that?
Patti: Oh, yeah. I don't think he ever, at any point, was ready to see life pass him by.
A boy in a hurrySeth Cook, 11, is a little boy with a big pencil—and an even bigger problem: Math. Like any school kid, Seth would rather be anywhere else, but math class is where we found him first.
Rob Stafford, Dateline correspondent: How are you doing?
Seth Cook, boy with progeria: Good. How 'bout you?
Stafford: Good. My name is Rob.
Seth: Nice to meet you.
Stafford: Nice to meet you. I think we have something in common.
Seth: Really?
Stafford: I don't like math!
(Seth laughs)
With a disease that perversely turns years and numbers upside-down, maybe it's no coincidence that Seth and math have always been at odds.
Stafford: I saw your report card. You're passing.
Seth: Yeah, see, you don't know the date on that report card though. (chuckle)
Stafford: Oh, things have changed since the last report card?
Seth: Little bit. (chuckle)
Though she had concerns, Patti believed Seth should go to public school, rather than be home-schooled.
But Seth's father, Kyle, was uneasy, considering the fact Seth is just over 3 feet tall and weighs only 25 lbs.
Patti: Dad was worried he was gonna get picked on.
Kyle: Picked on or get knocked over.
Patti: Get hurt.
Stafford: You were worried about that?
Kyle: Sure. If you stand him up right now next to his classmates they just tower over him.
On this school day, Seth is offering his sixth-grade classmates a living lesson in nutrition: "Saturated Fat by Seth Cook."
Seth: Saturated fat plays a big role in my life. My body is getting older faster than most people.
Amazingly, what others see as a burden, Seth sees as a blessing.
Seth: I'm one of 40 kids in the whole wide world that has progeria. So it's really neat.
Patti: By the time he was in grade school he knew that he was special, and we'd always told him that he was special.
At 11, Seth is about the size of an average 2-to-3-year-old and this is as big as he'll ever get. He's a young boy trapped in an old man's body-- no hair, wrinkled skin, and severe arthritis, especially in his knees and hips.
It’s his fragile cardio-vascular system, with the imminent threat of heart attacks, seizures and strokes that poses the biggest risk to Seth and other progeria kids.
Seth has to read nutrition labels and limit his fats.
Stafford: What are the things that you want to eat, but you just can't eat?
Seth: I don't get corned beef hash all that often.
Still, Seth doesn't seem to dwell on what he can't have. He focuses on what he can do. He’s about as well adjusted a pre-teen as you could find, whose best friend is his ubiquitous dog, a rat-terrier named Bullet and crazy for X-box games.
Stafford: How many hours have you logged with X-box?
Seth: I don't know. I'm happy though because X-box doesn't tell you how long you've been playing.
Stafford: You don't want to know.
Seth: I don't want to know.
Even with stubbed fingers, a common characteristic of progeria, Seth has become adept at the controls, an activity at which he can compete on an equal footing.
Stafford: I think this is the home court advantage right here.
But, with fragile bones, he's fearful of playing team sports or rough-housing with rowdy friends.
Patti: He says, "Those kids are crazy." They run around. He goes, "I'd get knocked over, mom." He usually himself will not do something if he's not confident.
Keeping Seth physically safe is one thing, but protecting him from hurt feelings can be more difficult-- like the time a young girl was adamant that Seth was actually a toy.
Patti: She walked up to Seth and told him he was not real. She said, "You're not real. Mommy, look at this boy. He's a doll. He's not real." I was in shock. I didn't know what to say. I decided to apologize to Seth for how she had acted and he said, "Mom, why are you sorry?" I said, “Some of the things she said weren't very nice. I thought maybe they were a little bit rude." He said, "Mom, she just doesn't know who I am."
That gave Patti the idea to introduce the "Real Seth" to every incoming kindergarten student at Darrington Elementary School.
Patti: I realized there will be kids that don't know who he is but in Darrington we have control of that.
On many Mondays, Seth reads a favorite book to an enthusiastic class of kindergarten students. Patti's plan is working for Seth and his new friends who enjoy his company so much they now seem oblivious to his condition.
Stafford, talking to the kindergarten class: How is Seth different?
Student: 'Cause he usually sits in a chair.
Stafford: He's different because he usually sits in this chair like the teachers do?
Student: Not on the floor.
Stafford: Not on the floor like you guys do?
Girl: He always comes in here to us.
Stafford: To help you?
Girl: And to read books.
Stafford: You love that book-reading from Seth, don't you? So when Seth is sitting here reading the book, what are you thinking about? Seth and how he might be different, or are you thinking about the book?
Girl: About the book.
For the most part, the kids look at Seth as a friend like any other kid-- but they have all learned what progeria is and what affect it has on Seth.
Teacher: Is Seth the same size as we are?
All: No.
Teacher: Will Seth ever be the same size as we are?
All: No.
Stafford: What do you think about that, that Seth looks different from you guys?
Girl: Seth is really special to us.
Teacher: Seth, thank you.
Class chorus: Byeeee. Thank you. Bye Seth. That was a good book.
