Hotmail
The remarkable Seth Cook
 | Slide show |
 |
Most popular Dateline pages |
Sign up for the newsletter |
|
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.
|
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. Read a note from his parents about his passing or read an appreciation of the young man's life by Dateline producer Fred Rothenberg.
- Discuss Story On Newsvine
-
Rate Story:
View popularLowHigh - Instant Message
MORE FROM DATELINE |
 Dateline Section Front |
| Add Dateline headlines to your news reader: |
Sponsored links
Resource guide