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 hurry
Seth 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.
Sometimes, children seem more at ease with Seth than their parents do. Seth says he often attracts gawking from adults.
Seth: This lady was staring at me and she didn't even see the sign in front of me, she just ran right into it. (Chuckle)Rob Stafford, Dateline correspondent: She kept walking and went boom?Seth: Yep.Stafford: Like right out of a cartoon.Seth: Pretty much. (Laughter)Stafford: What did you do?Seth: I laughed. I tried to wait till she got down the other aisle of the store, though.Stafford: You didn't wanna laugh in front of her?Seth: Uh-huh. (Negative)Stafford: And why is that?Seth: Because I didn't wanna hurt her feelings.Stafford: But she was kind of staring and being impolite toward you. So why would you care?Seth: Because two wrongs don't make a right.
Seth knows the way he looks attracts attention and his teachers say he often uses humor to put both children and adults at ease-- like on the first day of school when some classmates weren't quite sure how to react to him.
David Harcrow, science teacher: I was joking with the students and said, "If you get out of line, I've been known to toss a kid through a window." Seth raised his hand and said, "What do I have to do to get thrown out the window?" Of course he was joking right along with me.Stafford: He got your number that day.David Harcrow: He did. The students relaxed and they thought it was funny.
Tim Cousins, math teacher: I look at Seth sometimes, and I listen to young people complain, and I say to myself, "What a tough young man this Seth is."
Stafford: Little guy, but tough guy?Tim Cousins: Little guy, but tough guy.
After Rob and Seth climb up a hill together...
Stafford: I'm tired after that…Seth: I am, too.Seth: I’ve got arthritis. I can't go as far as most kids-- and I'll have to stop and rest.
Still, even with the arthritis, Seth is always eager for more.
Stafford: You up for the park? Or are you tired?Seth: Sure. I just gotta go grab my shades.
But first, a trip to the market, where we found ourselves swept up in the Seth Cook celebrity entourage.
Cashier: How are you doing Mr. Seth? Shopper: Hi Seth. How are you doing?Seth: Good. How about you?Stafford: There's another person you know.Seth: Yeah.Stafford: How many people do you know in this town?Seth: A lot of them. (Laughs)
There's a big advantage to living in a small town like Darrington, population 1200, where Seth gains confidence and security by knowing virtually everyone.
We bought bubbles for a game Seth plays with his dog.
Stafford: This is the first time I've ever put bubbles on an expense account. (Seth laughs.)
There was one more important purchase before we left-- energy vitamins, something his mom discovered on our way out.
Patti Cook: Oh my goodness.Seth: What?Patti: You're not taking those energy pills, are you?Seth: No.Stafford: Those are mine.Seth: Like I need energy pills.Mom: Like you need energy pills?Stafford: No, I need energy pills to keep up with you.
(Seth laughs.)
On this day, only the aptly named dog Bullet can keep up with Seth, chasing a tennis ball and then going bananas over the bubbles. Bullet crash-lands, and Seth, a little boy, lets out the biggest belly laugh.
Seth: Are you okay puppy?Stafford: I don't think so. Did you hear that thud?Seth: I did. (Laughs)Stafford: I think Bullet needs a stunt dog.Stafford, to Seth's mom Patti: How much does that laugh mean to you?Patti: Priceless. We try to get as many of those on tape as possible. I try to get my video camera out quite often. We wanna save that forever. Patti: He's definitely a joyful kid.
There's one unique place where he can be joyful and not feel different. It's the Sunshine Foundation's annual Reunion for kids with progeria, where he first went in 1995.
Patti: We knew we would come back every year because he had such a good time.
For 10 straight reunions, Seth has been comfortable in the company of children just like him.
Patti: It was an amazing experience for us to see him so happy.
To raise money for the 2005 reunion in Orlando, the Sunshine Foundation held a gala fundraiser in New Jersey. Seth put on his formal best, brought his favorite date and even gave a little speech:
Seth: Last year, we did a speech and my mom interviewed me. This year, we're gonna turn it around. Mom, what's your favorite part of going to the reunions?Patti: Being able to, first off, know that you have friends that are just like you. And you just have a wonderful week and I really like to be able to watch that.Seth: (Whispers to mom) I forgot my other question. (Seth, mom and crowd laughs)Stafford: On a scale of one to 10, 10 being the most important, how big a deal is this progeria reunion to you?Seth: Probably a nine or a 10. It's really neat there.Stafford: You love to go.Seth: I love to go. Seth: We get to go to theme parks. We get to be in a nice hotel. There's a swimming pool. It's always warm out. Big thunderstorms. That's really neat.Stafford: And you get to see those kids?Seth: Yeah, and I get to see my friends.
Seth is determined to make it to the next reunion and others in the years to come — provided his health doesn't betray him.
Back home in Darrington, just days after the gala fundraiser, Seth faced a serious medical crisis.
It looked like Seth might not get his wish.
Patti: You know, it's scary for us. I can't imagine being in his body when that's happening. He woke up and said his arm was numb.
February 2005: It was the middle of the night, just days after returning from the fundraiser in New Jersey, Patti and Kyle were sound asleep in their bedroom when Seth called out from across the hall.
Kyle: It’s like 2:30 in the morning and he woke up and told us he thought he was having one.Stafford: He said, "Mom and dad, I'm having a T-I-A."Kyle: Yeah.
His cry in the night was what Seth's parents had dreaded ever since he was diagnosed with progeria. Seth was having a seizure, known as a TIA, a precursor to a stroke that briefly cuts off the blood supply to the brain.
Rob Stafford, Dateline correspondent: How many of these mini-strokes has Seth had?Patti: He's had a few.
In fact, just 3 months before, Patti said he had two TIAs in a single hour, making them very nervous.
Patti: A lot of times it leads up to a major stroke and now it was happening all over again.
Customary for senior citizens, not 11-year-olds, Seth's seizure had all the classic signs: facial paralysis, slurred speech and overall numbing.
Stafford: How did he look?Kyle: A little bit scared.
Patti and Kyle immediately sprung into action.
Kyle: We're both in there to calm him down and comfort him.
But in the back of their minds, there was unimaginable fear. It's a fear they live with every day, the way other adults are terrified of that late-night phone call about their elderly parents.
Kyle: You never know, is the time, you know, it's gonna be the end?
If things had gotten worse, they would have rushed him to the hospital, where he'd been several times before.
But after about 10 minutes, the symptoms subsided and the ordeal was over. For now.
Patti: It's scary for us. I can't imagine being in his body when that's happening.Stafford: Is it scary?Seth: It's pretty scary, yeah.
Patti was so concerned she put Seth's name on their church prayer list.
Patti: He wasn't too keen on that.Stafford: Why not?Seth: I don't like people feeling sorry for me.Stafford: But if you're on the prayer list, it's not because they're feeling sorry for you, they're trying to help you out.Seth: I know. I just don't like too much attention where they're worried about me.Patti: I think he wants people to enjoy him for who he is and not worry about his sickness.
And no one has taken that lesson to heart more than Patti and Kyle. Despite their son's devastating disease, they refuse to dwell on the negative.
Patti: How are we gonna choose to deal with this? Be devastated or are we gonna choose to try to live his life out the best that we can? We definitely choose to try to live his life out the best we can.
To be in a sour mood, or to be sad or to feel like I was crying in front of him. It wasn't acceptable to me. I didn't want to spoil his joy.
Stafford: So how much acting do you have to do to get through the day?Patti: I don't know if it's acting, you know. He's such a joy to be around that you can't help but be happy.Kyle: We're better people because of Seth, no doubt about it.
And as devoted as two parents could be. Despite living in small-town Darrington, they've found ways to expose Seth to as many exciting experiences as possible.
They've taken him all over the country -- to Mount Rushmore, the White House and SeaWorld in Orlando for previous progeria reunions.
And as Seth told us, he can't wait to go to Orlando again for this year's reunion. He's also met some celebrities -- movie star Sandra Bullock and NFL quarterback Matt Hasselbeck.
But his biggest thrill was when his parents set up a meeting with country music star Alan Jackson.
Seth: My dad was a big fan of Alan Jackson and it passed down to me. He's my favorite singer.Stafford: What's your favorite song?Seth: "Little bitty."Stafford: Why do you like that song so much? Seth: Because I'm little bitty.
From his perspective, from the tiny La-z-Boy in his room, Seth Cook is living large.
Seth: I love everything I have. I have more than I could possibly think of. I love my dog. I love my mom and dad.
Seth will tell you, the trips and celebrities are certainly nice, but there's nothing he enjoys more than down-home family activities, like the day we watched a cutthroat game of Monopoly with his parents and two cousins.
Here he's teasing one cousin about her schoolgirl crush that he thinks he's revealing on Dateline. Only we've deleted the name to protect the innocent.
Seth: She likes (bleep).Seth's cousin: Shush. (Laughter)Seth: Live TV. No, not live. Nationwide TV!Cousin: I'm gonna cry.
And while playing Monopoly, in possibly the best use of the math he hates, he's counting his good fortune and not hiding his glee.
Seth: I get 200 bucks. (Cackles) I get 400 bucks. And I got past all your properties. Four hundred bucks.
Patti: I really like to be around him. He's fun, he's quick-witted. He can make me laugh.
And to be around him as much as she can for the time they have together...
Patti quit her job at a local mechanic's shop. It's also why Kyle leaves his construction job and hurries home for lunch and why weekends are family time.
Patti: You're getting better at that.Seth: Here, I'll get it.Patti: Oops. (Laughs)Kyle: Did your mom sit on the dog?Patti: (Laughs) I did sit on the dog. Are you ok?Kyle: He growled at you.Patti: Poor doggie, I'm so sorry. Stafford: What's your best day?Kyle: My weekends are my best days, with Patti and Seth, you know?Patti: Mmm-hmm.Kyle: If we get to go fishing or hunting or camping.
And those days mean so much to Seth, like the time his dad bagged a bear, and Seth, who was along for the ride, bagged quite a story to tell his friends.
Seth: So we started flying down the mountain, my hot cocoa started spilling. We stopped, poured out the hot cocoa, and then started speeding down the mountain again. We got to the bottom, and the bear was still there. So my dad chased it up a tree, and shot it out of the tree.Stafford: You saw the whole thing?Seth: I saw the whole thing.
Kyle is an accomplished outdoorsman and Seth, his young protege. Kyle taught him how to shoot a rifle.
Stafford: Let's go for the big game, Dr. Pepper.
With soda cans loaded for bear, it's target-practice in the Cook's backyard.
Stafford: Ready to go?Seth: Yep.Stafford: I’m gonna stand back a little. (Laughter)
Sporting his miniature 22-caliber rifle, Seth misses on his first shot.
Seth: Almost.
Reloaded, he takes aim again.
Stafford: There you go!Kyle: That's a pretty good shot, buddy!Seth: Thanks!Kyle: Seth’s a blast to be with, you know? I can't think of anyone else I’d rather spend time with so I enjoy every minute of it. Seth: I caught a fish.Kyle: Alright Seth, cool.Stafford: Some of those fish are almost bigger than he is.Kyle: YeahStafford: He’s only what? Twenty-five pounds?Kyle: Yeah.Patti: Twenty-five. And that's soaking wet. Stafford: Time is something that you must watch really closely.Kyle: More so every day.Patti: Definitely more so every day.
And that's why they've chosen not to have any more children, preferring to focus all their attention on Seth.
Stafford: Do you pray for a cure? Kyle: I’ve prayed for cures a lot.
And this scientist, racing the clock, is their best hope to answer their prayers.
Dr. Leslie Gordon: Once you know a child with progeria like you've gotten to know Seth, you love them.
Every morning and every night I see the faces of the children that I know and they inspire me.
Even for an 11-year-old boy in a hurry, there's still time on Sunday for religion and reflection.
Patti Cook says her family's deep Christian faith has helped them cope with Seth's progeria and manage their grief.
Patti: I pray a lot. You know, I definitely rely on God for a lot of strength-- because if I had to do this on my own I'd be a basket case.Rob Stafford, Dateline correspondent: What do you pray for?Patti: Anytime I pray I really do make sure to thank God for the things that I have. Every moment that I have with Seth, I really do thank him for that.
And how much time do they have?
Patti: Most children with progeria live into their teens. We're getting close. We really are. Time's ticking.
Still, they have hope-- even new hope.
Patti: There are some really dedicated doctors out there working on a cure for progeria.
But none more dedicated than this woman, Dr. Leslie Gordon, a hero in the progeria community.
Leslie Gordon: We're in a race to save every child with progeria.
Dr. Gordon and her husband, Dr. Scott Berns— both trained in pediatric medicine— founded the Progeria Research Foundation in 1999, at a time when little was known about the disease.
The foundation raised money and assembled research teams that, just three years later, in 2002, made a remarkable discovery -- the cause of progeria.
Leslie Gordon: The researchers involved have found the gene for progeria.
Researchers found that with progeria, a random DNA mutation produced an abnormal cell, causing the cell's accelerated breakdown and aging.
Leslie Gordon wasn't in the lab when her fellow researchers had the eureka moment of discovering the gene, but she and Scott quickly got the stunning news by phone; and it happened to be on their wedding anniversary in 2002.
Scott Berns: That was just the most amazing anniversary gift we could have received. This is what we've been waiting for. This is what we've been hoping for, and now we're there. Then quickly, my mind went to, “OK, what's next? Treatment, cure.”
A cure? It's what Seth Cook's parents have been dreaming about.
Kyle: I think anything's possible. There’s a lot of good research going on.
Patti and Kyle know it's a long shot. A cure, if and when it comes, might not come fast enough for Seth. He's 11 and children with progeria typically die in their early-to-mid teens.
Still, there's no doubt the work by Dr. Gordon has improved Seth's odds.
Stafford: Is Dr. Leslie Gordon your best hope?Patti: For a cure? Yeah, especially for future children with progeria. Stafford: Seth's family says that you are their best hope. What can you say to them?Leslie Gordon: Oh wow. We hope we pull through. Stafford: what kind of pressure do you feel?Leslie Gordon: I think about them. They're hopeful and they believe we can do this. And that is inspiring.Stafford: Put your most optimistic look on the search for a cure.Leslie Gordon: I'm very optimistic. I'm very hopeful that we could find significant treatments within the next few years.Stafford: and put your most realistic look on the search for a cure.Leslie Gordon: I think that's realistic.Stafford: You do?Leslie Gordon: Of course.Scott Berns: I firmly believe that this is gonna happen.
In part, their optimism stems from how fast scientists discovered the progeria gene. Keep in mind; before the progeria research foundation was formed in 1999, Patti, Kyle and the parents of other progeria children had no resources and virtually no hope.
Now, there's plenty of hope. Last year, clinical trials with a drug being tested to treat cancer, also seemed to correct progeria cells in the lab.
Dr. Gordon believes that the drug, called an F.T.I. could one day soon be used to reverse, or at least stall, the rapid aging that devastates children with progeria.
Leslie Gordon: We’re excited about the potential for that type of drug.
Dr. Gordon, who was recently profiled in the New York Times magazine, is also excited that any breakthroughs in progeria research might lead to better understanding of aging in the general population as well.
Though the scientist in her knows that research like this takes time, the mother in her can't wait that long.
Leslie Gordon: It is never fast enough for a parent.
That's because Leslie and Scott are parents of a boy with progeria, 9-year-old Sam. He was diagnosed before his second birthday.
Stafford: This is not just work. This is as personal as it can possibly get?Dr. Scott Berns: Absolutely. We’re racing to save Sam. And we're racing to save Seth and other children with progeria. That's our mission. That's our passion.Leslie Gordon: It's not just Sam, although of course that makes it all important to us. It's all of these children. Once you know a child with progeria like you've gotten to know Seth, you love them. And you want to do everything you can for that child.
Spring 2005 Darrington, Washington: Seth is showing signs of physical deterioration, since we began covering him four months earlier. His teachers, who see him all the time, have noticed.
Eileen Porch, Seth's kindergarten teacher: He looks older. I can definitely see that in his hands.
The arthritis in his knees, particularly, is worsening. He's now so stiff he can no longer reach down to tie one of his shoes.
Patti: When I realized he couldn't tie his left shoe, it was kind of a shocker to me.
Several times a week, Seth works on his flexibility in physical therapy in school, while his classmates get to play outside.
Seth's physical therapist: So we'll just move your extremities.Stafford, to physical therapist: Why is it so important to do this?Physical therapist: Just to keep that range of motion. He's lost some. He's getting pretty stiff in his left hip and hands.
Back home, there’s another important health ritual at night…
Patti: Seth, it's your favorite time of day.
Medicine... Plavix is a blood-thinner designed to prevent or delay the most serious threats-- heart attack and stroke.
Stafford: Plavix is a drug that a lot of older people actually take, right?Seth: Yeah. It's nasty.Stafford: Nasty stuff?Seth: Yeah. (Chuckles)
Because the pill is too big for Seth's throat and to cut the awful taste, Patti pulverizes it and blends it with ice cream ... Not a topping any child would want.
Patti: Big bite, ready?
But it still tastes terrible... Just another indignity Seth endures with a gulp and a grimace.
In bed, Seth and Patti say their nightly prayers...
“Now I lay me down to sleep. I pray the Lord my soul to keep. God bless everyone in the whole world in Jesus' name. Amen." (Kisses)
Patti: He worries about people. When we pray at night, I know that he prays for others.
But Seth sometimes does think about himself. And right now, he can't wait for the progeria reunion just a few weeks away.
Another trip to Universal's earthquake ride is on top of his to-do list.
Seth: That was really fun. We’re in a subway and it starts shaking, and the subway train starts coming backwards. (Chuckle) It's really neat.
For Seth's parents, it's been a bumpy ride of a different kind. Despite their brave face and upbeat nature, in their quiet moments, they can't help but wonder how long before his health gives out.
Kyle: It’s inevitable. It's gonna happen. We just have to be as ready as we can be for it-- and hope it's not soon.
After a year of anticipation, Seth has made it to the Sunshine Foundation's annual Progeria Reunion.
Patti: I'm Patti from Washington State. And this is my son, Seth, and we're really happy to be here.
Naturally, the kids' favorite activities were the day-long trips to Orlando's popular theme parks, where Seth and a young friend from Belgium got to hang out together and travel around in style.
At Universal Studios, Seth was excited to get back on the ride he'd raved about: "The Earthquake." At Disney World, he was less interested in Mickey Mouse than Mickey's creator.
Seth: Hey mom, I want to get a picture of Walt Disney.Patti: You want a picture of whom? Walt? Okay.Seth: I got him.
He also swam at the Sunshine Foundation's Dream Village, where he could soothe his aching knees in the pool with his mom.
And, although Seth's mountainous make-your-own ice cream sundae was definitely not on his low saturated fat diet, he had one.
Seth: I just like the candy.
It was mostly for show anyway. He barely would make a dent in it. Those nightly medicine-flavored concoctions have ruined his taste for ice cream.
As usual, the 5-day reunion wrapped up with a dinner-dance. Mostly, the beat was up-tempo but occasionally it slowed down.
Kyle: Seth has brought us a lot closer. Not just as a family, but me and Patti, too.
Statistics show that many marriages don't survive a child's destructive disease, but Patti and Kyle say it's been the opposite with them.
Patti: He’s been such a blessing in our lives.Stafford: What have you learned from Seth?Kyle: How fragile life is, for one.Patti: I’ve learned a lot about choices, too. You never will have control of your circumstances. But you do have control of your choices. And he has made a choice to enjoy his life and so why wouldn't we?Stafford: If people watching this worry about you, what do you want them to know?Seth: I’m doing fine.
And to hear Seth, the boy in a hurry, tell it... He'll be fine forever.
Seth: I can't wait to get to heaven.Stafford: Can't wait?Seth: Mm-mmm.
Heaven is a subject most 6th graders never think about but he brought it up himself. Patti says Seth doesn't fear death and he's anxious to see his late grandfather in heaven.
Patti: Seth and I, we've always had conversations about progeria and that children with progeria go to see Jesus usually when their younger, and not when they’re old. I remember about 7 or 8 , we told him that he probably would go see Jesus before we did. And, he thought that was thoroughly okay.
Stafford: What do you think heaven's like?Seth: I’m gonna go fishing with the Lord. Fishing for Swedish fish and hunting gummy bears and chocolate rabbits. Seth: It's guaranteed that you catch at least 10 fish a day.Stafford: And you don't have to throw them back?Seth: And you don't have to throw 'em back.Stafford: Sounds like a nice place.Seth: It's gonna be.Stafford, talking to Seth's parents: He said, “I can't wait to go to heaven."Patti: Uh-huh (affirm).Stafford: And, I wanted to say, (clearing throat), "Please don't hurry."Kyle: Yeah.Patti: I’ve told him to be patient. I’ve explained to him that, "You're here for a purpose and don't be in such a hurry because God’s got a job for you to do, and it may take a while before he calls you home."
Update: Almost a year after we first aired his story, Seth Cook passed away on June 25, 2007. about his passing or read by Dateline producer Fred Rothenberg.