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Living with ALS; World on Baby Watch

Aired July 23, 2013 - 13:30   ET



SUZANNE MALVEAUX, CNN CORRESPONDENT: I just felt like being on the floor was the most comfortable place. It was the only place I wanted to be.



I was just very afraid.

MALVEAUX: Mom responded differently, embracing her New Orleans roots -- (SPEAKING FOREIGN LANGUAGE) -- "Let the good times roll."


MALVEAUX: In 2012, we squeezed in two family reunions, a beach trip, a birthday party, a visit to the White House, and her own wish come true --


MALVEAUX: -- to drive an 18-wheeler.

MYRNA MALVEAUX: I like it. I can do it.

MALVEAUX: But life for mom got tougher fast. Within a year, she could no longer swallow or breathe on her own. Speaking also became very difficult.

FLOYD MALVEAUX: Are you angry?



MYRNA MALVEAUX: I'm just dealing with it. No, I'm not angry, at least not yet.

MALVEAUX: Mom decided to fight, first, by going before the FDA to push to make drug trials more available, something that was too late for her.

SUZETTE MALVEAUX, DAUGHTER OF MYRNA MALVEAUX: Mom has always said, I'm on board. I urge you to get on board too. MALVEAUX: She also wanted to tell our family story, but the week we were scheduled into our interview she was rushed to the E.R. with pneumonia, which changed everything.

FLOYD MALVEAUX: She was having difficulty breathing and said, I'm exhausted.

MALVEAUX (on camera): She was so, so scared. You could see it in her eyes how scared she was.

MALVEAUX (voice-over): Mom was transferred to Johns Hopkins where there's ALS specialists.

FLOYD MALVEAUX: I thought we could have lost her that night.

DR. JEFF ROTHSTEIN, ALS SPECIALIST: If your mother was in the end stage of ALS, she would have moved into a coma and would have died within a few days.

MALVEAUX: Instead, mom chose an extraordinary life-saving measure, to get a tracheotomy, a tube hooked into a machine that would forced air into her lungs and breathe for here, a game changer.

ROTHSTEIN: We haven't cured them of their disease but we do keep them alive.

MALVEAUX: 90 percent of the ALS patients do not get a trach, either because they don't have the money, the resources or the desire.

Keeping alive is hard work for mom. Since she cannot clear her throat, a machine has to do it for her. A procedure, that's done a dozen times a day, relieves the feeling that she's drowning.

Mom uses a word board to spell out our conversations.

(on camera): Very tall.


MALVEAUX: Occasionally, through a speaking valve put on her trach, she's able to talk a few sentences at a time.

(on camera): Can you say hello.


MALVEAUX: Hello. I love your voice.


MALVEAUX (voice-over): It would be nine weeks in the hospital, learning how to care for her before mom would be able to come home on life support.

(on camera): Breaking out. Getting out of here.



MALVEAUX (voice-over): Her journey is bringing us closer together and changing us as a family.

FLOYD MALVEAUX: I learn I have inner strength I didn't think I had.

MALVEAUX: Mom's message to all of us?


MALVEAUX: Because, after all, mom is still mom.

SUZETTE MALVEAUX: She's still giving me a hard time about my curly hair being messy or --



FLOYD MALVEAUX: She's a fighter.

MALVEAUX: These days, she has a new sense of freedom, zooming around the house in her motorized chair usually with grandkids in tow.


MALVEAUX: The sun on her face surrounded by family, she's still leading the parade.



MALVEAUX: Joining us is my friend and senior medical correspondent, Elizabeth Cohen.

It's hard to watch the piece sometimes, but I'm proud of my family. It took a lot for them. But mom kind of set the tone and set the stage and wanted to tell the story.

ELIZABETH COHEN, CNN SENIOR MEDICAL CORRESPONDENT: Your mom is so amazing. I've seen that piece so many times. Every time I see it, that's what I come away with it is how amazing and strong your mom is and also how amazing your family is to come forward like that and to teach people who have perhaps now just been diagnosed.

MALVEAUX: We're seeing pictures, I mean, to give you a sense of what it's like. Her spirit is strong and her body is weak. But here spirit is strong. She has the grandkids around and taught my sister last weekend how to make gumbo. They are fascinated by here.

Somebody described it to me this way, the disease, imagine, if you're sitting in chair and duct taped from head to toe and the only thing that's open are your eyes. Your body is paralyzed but your mind and your spirit are very much alive. What it taught me, it's changed how I see the notion of being alive. You can't speak, you can't breathe, you can't move. What does it mean to be alive? It's that emotional connection you have with someone who you love.

COHEN: What's amazing about here and your whole family is you still have that connection. Even though she can't move or speak freely, you still have that connection. You see that in the video, the kind of connection.

MALVEAUX: She's the one, if I'm having a bad day, saying, don't be a wimp.


Tell me, Elizabeth, because I know it was a frustrating experience. This was something a year and a half, within a year and a half this is where we are with this disease. It was simple as like slurring of the speech, you would think that's a stroke, or a fall that she took, you would think that's arthritis, and then we get this diagnosis. Why is this so difficult to detect early on?

COHEN: I think you said it. It mimics so many other things. There's so many people have ALS misdiagnosis stories. It looks like so many other things. When you see slurred speech, for example, you're going to think stroke, which is much more common than ALS. That's rough, because you want to diagnosis as quickly as you can.

MALVEAUX: Elizabeth, thank you.

We'll have two other parts of the series as well. We'll be talking with you, Sanjay Gupta and many others.

We appreciate it.

If you would like to read more about ALS and how you can help push for a cure, go to and

We're going to be talking to former NFL star, Steve Gleeson from the New Orleans Saints. He was forced to retire after he learned he had ALS. We met up with him and his wife a couple of weeks ago to hear his amazing story of survival, how he is mobilizing to fight for a cure. You can see the story and the rest of my three-part series on ALS, that's thursday at 1:00 eastern and also Friday as well. You can go to for more on my story and to learn more about the research and efforts to diagnose this disease and a search for a cure.

And we're watching everyone, keeping an eye on that door. We're on royal baby watch. We expect and anticipate moments from now that we will see a first glimpse of the royal baby boy.

I want to bring in Max Foster who is outside the hospital now.

The anticipation palpable. Tell us what's going on outside.

MAX FOSTER, CNN ROYAL CORRESPONDENT: Any moment now we're going to find out that their imminences will be coming out on the steps. That's the right phrasing. Basically, very soon, within the next 10 minutes perhaps, you're going to see the Duke and Duchess of Cambridge coming out onto those steps. They're going to pose for photographs. They're going to come down and William is going to take some questions, probably a couple of questions to the media. They'll then go back into the hospital, put the baby into car seat, and come back out and drive off and go back to Kenningston Palace. In the next 10 minutes or so, we'll see this royal baby we've been talking for so long on that door step.

MALVEAUX: Max, set the scene outside of that hospital. You've been there for days in anticipation of this moment. What's taking place? Give us a sense of what's around you.

FOSTER: The road is still sort of vaguely open but there's a massive crowd all the way down the pavement. We can't turn the camera around because it's so jam packed. There's an absolute wealth of photographers and journalists all poised for this moment. And hospital staff around all the windows, looking down. All pointed on that doorstep. It's so iconic after when William and Diana appeared there 31 years ago, and Charles, of course.

MALVEAUX: Tell us about the security. We're seeing a couple of people posted outside the hospital. I imagine there's a lot more folks who are, when you see this baby come out, watching, making sure that nothing goes wrong.

FOSTER: Absolutely. There's police all the way down here and detection officers as well, of course. It's absolutely rock-solid safe. We're all in pens. They know how to keep us in as well. I think it's going to be fine.

But this is an exciting moment. There's a real sense of excitement here. It's going to be very noisy and very bright. The baby will have quite a shock to the real world. He's only a day old. He hasn't been outside before. And he's going to have this major introduction to the world.


And it's interesting, isn't it, Suzanne, because he's going to have this world of media, which is so explosive, the first big birth in the Twitter age. This is going to be so symbolic of what that baby is going to face in the years to come, all of this scrutiny. All royals have had that over the years and most celebrities, but not under this level of media attention. When William came out, there were only two TV crews, Suzanne. I can't even count them for you on this day.

MALVEAUX: The grand introduction about to happen moments away.

Max Foster, stay with us.

We'll keep our eyes trained on that door of the hospital.

We'll take a quick break, but as soon as someone walks through that door, we'll come to you live. (COMMERCIAL BREAK)

MALVEAUX: I want to welcome all of our viewers here.

This is a historic moment. We're keeping our eyes on the door outside the hospital. We expect the royal baby to emerge with his parents. Just moments away

We have full-team coverage. We're on the ground here. Max Foster is right outside the hospital. Matthew Chance is in Kensington as they believe the baby -- they will take the royal baby. We have Victoria Arbiter, our CNN world commentator. Her father worked for the palace.

This is an extraordinary time and an extraordinary moment here.

I want to start off with you if we can, Max, outside -- give us a sense of what it is right now. The electricity in the air. The anticipation in the moment of this loyal baby emerging.

FOSTER: Suzanne, I think you've live this with me over the past week or so.


We've built up to this. We had the prince of Wales. We had the parents of both sides coming today. We didn't know if it would be today or tomorrow. Very, very soon it will happen. We're waiting for a five-minute warning. I can tell you what's going to happen or what the plan is. They generally stick to the plan. What's going to happen is you'll see the duke and duchess come out with the new prince. They'll pose. William will come down and answer a couple of questions. Then the family will go back inside. They'll put the baby into a car seat. They'll come out with the car seat and drive back to Kensington Palace.

The parents have been so hands-on. William has been there throughout the labor. He stayed in overnight. They'll put the baby in the car seat and drive off. Whether he will drive or not, that will be another sign this is a very hand's-on couple.

MALVEAUX: That will be amazing to see.

I want to bring in Matthew Chance out of Kensington here.

Because we think that's where they are headed next, is that right?

MATTHEW CHANCE, CNN INTERNATIONAL CORRESPONDENT: Yeah, we're almost certain that's going to be the case. This is Kensington Palace. It's where the royal couple and their son will be living. There's hundreds of thousands of dollars that's been spent over the course of the past several months. Also renovating the apartment, apartment number 1A, which will the apartment where the royal couple will live.

Once they have left the hospital -- we're hoping to see at some point very shortly -- the expectation is they will come here by car and start their new lives together in this, what will be, their family home in London.

MALVEAUX: I want to bring in Kate Williams at Buckingham Palace.

Kate, we've been following this for days now. It goes from one place to the other. What do we think will unfold at Buckingham Palace? It's official, it's a baby boy. Everybody was waiting to find out. Soon we'll see him.

KATE WILLIAMS, CNN COMMENTATOR: Hopefully, we'll see them in about 10 minutes. They'll be going out of hospital. And Prince Charles came out. He shouted back, "Marvelous, marvelous. You'll see him in a minute." That was pretty exciting. I think we can expect to see the royal baby within about 5:00, 7:00. Obviously, they want to get him home to home to Kensington Palace and get him to bed. There's no way any baby will sleep through those flash photography lights.

MALVEAUX: By 7:00, that's in the next couple of minutes.

I want to go to Victoria Arbiter, our royal commentator.

Tell us about the historic nature of this moment because a lot of people talked about Princes Diana and how she had her little sons in her arms and she brought them out there. Give us a sense of what we'll see.

VICTORIA ARBITER, CNN SENIOR ROYAL COMMENTATOR: I think this is going to be a very poignant moment for all of us that have seen William from a baby growing up and into adulthood. Of course, he and his wife, the new baby will be standing on the very same steps in front of the very same door that Charles and Diana stood on with him over 31 years ago.

Of course, we miss Diana's presence tremendously always but especially when we have these large events and these pivotal moments in Williams' life.

So we'll see them come out. Charles, he spoke to the press, a couple of comments. I think William will do the same thing. Bu what Charles didn't have to deal with was the car seat. They weren't required in 1982.

I think it's very sensible that William will go inside to do the car seat because that seems to be a right of passage for a new parent, trying to figure out how it works.


MALVEAUX: I want to bring in our Christiane Amanpour.

Christiane, you've been covering many years the royals. What do make of the differences you see -- talk about the car seats and the tweets, but there's tradition, a lot of tradition that also goes with this moment as well.

CHRISTIANE AMANPOUR, CNN INTERNATIONAL CORRESPONDENT: There is, Suzanne. This is what makes England and Great Britain exactly what it is because this is the kind of tradition that's glued this country together. It's glued its people together for thick and thin for generations.

It's very, very different from other royals around Europe who, as we have seen over the last several months and years, have been retiring in favor of their younger, perhaps more able sons and daughters. That isn't going to happen here. The queen of England is not going to abdicate.

This is the kind of thing that gives a jolt of life, a jot of hope, a jolt of real pleasure. A sense that all is right with the world because we do live in a very difficult world, difficult times with not just the financial crisis but with wars all over the place, natural disaster, so many children who we report upon on a daily basis, who are the victims of the most terrible crimes and devastating diseases sometimes and the kind of slaughter that we see in Syria. This is what people see every single day in their newspapers and televisions and online. This kind of story is so important for that reason as well. It's kind of antidote to the hardship and cynicism that we live with. People are longing for something that brightens up their day, combined with the royal family, that's such an integral part of this country. Most people wandering around with a smile on their face whether or not they're near the hospital or not.

MALVEAUX: I want to go back to Kate Williams.

Prince Williams said marvelous, the baby is marvelous. I anticipate that we'll see a lot more of the family in the days ahead.

KATE WILLIAMS, CNN CORRESPONDENT: Well, Prince Charles obviously came out and he was delighted. He issued a statement yesterday saying, he was thrilled, proud, overjoyed. We didn't expect him to give a comment. We thought he would get into the car. But the Middleton's had also done so earlier. They said the parents were doing well, the parents were fabulous. And when a well-wisher said, how is the baby, he said, "Marvelous, marvelous." That's when he got us all excited to hear. He said, "you'll see him in a minute." It's been active anticipation every since. People have been running here because what we see is that big baby shot is coming. That shot we will never forget of Charles, Diana, William on the steps so many years ago. We'll see that again. Charles, Kate and baby, who might be asleep when it comes out. By the time he gets to the car, he'll be a bit woken up by the fact that he's really the future king of the United Kingdom, and also someone who the world media, many people in the world are absolutely fascinated by.

At the moment, he's living in blissful ignorance.


Soon, he'll be very aware.

Victoria, I want to bring you into the conversation, being a royal watcher, you've known for decades and decades now what the experience is like. How is this little baby, this little boy, who will become the king, how will his life be different than what we have seen?

ARBITER: I think most importantly the way it will be different is we live in a multimedia age now. We have pages and pages and people are dying to fill them with pictures of them. While Diana may have had a photographer follow them every now and then, they could go fairly unnoticed. Now everyone has a camera phone. They are eager for every little tidbit of news. This baby will be the most photographed, watched, and most talked about baby in history.

MALVEAUX: I want to welcome our viewers in the United States and around the world. We're all trained, our cameras and eyes. We're watching as you are there. This is St. Mary's Hospital in London. That is the door that we will see, of course, the duke and duchess with the new prince coming out. This is the first time the world will get a chance to see this new prince, heir to the throne, soon to be, eventually to be king. You can just imagine the excitement and electricity outside of this hospital as the world waits for a glimpse of this new prince.

I want to bring in Matthew Chance out of Kensington Palace.

I was talking to Victoria here. She was talking about the different era and age. Do you think the expectations of what he is expected to do will also be different in some ways?

CHANCE: You can almost guarantee that every move this child makes is going to be closely examined by not just Britain, but the media around the oral and the public around the world. Everyone has a camera phone, he will be photographed, videoed, documented everywhere he goes. I think it will be very fascinating to see the first glimpse this baby will get of that international stardom. He has been born into it essentially. When he moves out of that hospital, he will be greeted with frankly an awesome vision, if you can see it at this point. The world international media taking photographs, asking questions, and that's just the first taste of what this young prince will have to deal with, cope with, and endure over the course of his life. It's going to be a big challenge for him.

MALVEAUX: I want to bring in Max Foster. Max, we can't bring you in enough or talk to you enough. You're there, watching that door, paint the picture for us here. What is it like to be there?

FOSTER: It's just an extraordinary scene. There is cameras and journalist all focused on that doorstep. It will be, you know, almost a symbolic moment born into the social media age. And it's going to have a spectacular debut. When William was born here 31 years ago, there was just two camera men. And I can't even count them here. So there will be a lot of discussion if there will be a picture of the baby's face. What William will say when he goes to the cameras. He will only take a couple questions but he will speak at the microphone that we set up.

We won't get the name tonight, I've been told, Suzanne, so there's an update. With prince Harry, we did get the name on the day of departure. With William, we had to wait several days. We are not going to get the name of the baby tonight.

MALVEAUX: All right, Max.

We want to bring in Victoria Arbiter, our royal commentator.

Max says we won't get the name today. There are some names that people are talking about that they think are possibilities. Where are the names coming from and what do we think they are.

ARBITER: George has been the front runner from day one, once people started playing the name-guessing game. It pays tribute to the queen's grandfather and her father. There have been six Georges. We may see Philip, a tribute to the Duke of Edinborough. We may see Charles, we may see Arthur. I think Arthur a long shot for a first name as well. William and Charles share it as a middle name. There's the legend of King Arthur and numerous princes. James is a favorite, up there with George. I think you're seeing continuity, history. What will be interesting is to see Frances, with "es" at the end, which is Diana's middle name, Francis with "is" at the end is Michael Middleton's middle names. So that would be a fitting tribute to both sides of the family if they include Frances as well.

MALVEAUX: I want to bring in Kate for the discussion.

Kate, talk about the history of royal babies being brought forward. Until Diana, all royal babies were born at home, and they were not shown until the christening. They were hidden away in the palace. We're keeping our eyes on that door. All eyes on the possibility, very, very soon, of the first glimpse of the new royal baby boy. Tell us again. Sometimes it's difficult for people to relate to this. This is a very British and royal moment. But at the same time it captivates your attention. What's the draw?

WILLIAMS: A great question. Until, Diana had her baby, before that, royal babies were born at home. Prince charley was born at home, Buckingham Palace. The crowds were waiting outside. They weren't' shown until the Christening. Before the 20th century, they were really hidden away, rather strange rules. But that's the way they though you brought up a baby in the 19th century. You hid them away in the dark. A bit strange.

MALVEAUX: All right. A little strange there.

Hardly what we are doing today as we keep our eyes on that door. St. Mary's Hospital, all eyes on the possibility of very soon the first glimpse of the royal baby.

I want to go to Christiane Amanpour at the parliament there.

Tell us, again. I mean, sometimes it's difficult for people to relate to this. This is a very British and very royal moment, but at the same time, it captivates your attention, the world's attentions. What's the draw?

AMANPOUR: It's a fairy tale, and everybody can identify with that. it's a birth, and everybody can identify with that. It's what makes this place what it is. People around the world expect from United Kingdom, this kind of royal pageantry, whether it's the royal wedding, you saw that turned hundreds or millions, perhaps more, perhaps a billion viewers on television, and brought $500 million pounds into the country, and also the same with the queen's jubilee. It brings money to this country and gives it a real shot in the arm and an infusion when necessary.

We're here at Westminster. And you mentioned the parliament that's behind me. The building has seen so much and so many periods of history. One of the last things, the most recent things it did here was to pass legislation that, had the baby been a girl, would have seen a change in the royal succession. The girl baby, had she been born, would have been third in line to the throne, the latest heir. That is a change with protocol. It has always been the boy who has been the heir. So it's been a big, big change. It was a lot of wishful thinking, certainly amongst many women in this country.

Also here at Westminster throughout this day, we have a camera and many people's eye is on Big Ben. They're timing every minute and second of what's going on, but the bells have been pealing and they went on for hours. Now you can hear the 7:00 local bells of Big Ben chiming. One of the ways this baby was welcomed, today, many hours after it's birth, was by the major abbeys and cathedrals ringing their bells for hours.

MALVEAUX: Christiane Amanpour, thank you so much.