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Nightline: UpClose with Ted Koppel. “Arya Singh.”

ABC NEWS
UPCLOSE: ARYA SINGH
ANCHORED BY: TED KOPPEL
WITH GUESTS: LOREN ENG AND DINAKAR SINGH
JANUARY 21, 2003

TED KOPPEL, ABC NEWS

(OC) “Up Close” tonight, a young girl, a two-year-old, whose name is Arya. She lives in New York City, with her parents and baby brother. Arya has a genetic disease that the scientific community says it is close to being able to treat. It’s called SMA, spinal muscular atrophy. There are about 25,000 people in this country, mostly children, who have SMA. That’s about as many as have Lou Gehrig’s disease or cystic fibrosis. But the odds are, you’ve never heard of it. Arya’s parents, Loren Eng and Dinakar Singh, are doing everything they can to change it. They, along with other parents like them, are raising money, meeting with every congressmen, every health official who will listen to their story. They are desperately working to make possible a breakthrough in time to help their daughter. But tonight, they should tell the story. “Up Close,” Arya Singh.

DINAKAR SINGH, ARYA’S FATHER

She was just a cuddly baby from day one. She almost, she rarely cried. She slept through the night within a couple of months. She had one cold in her first year of life. I mean, we heard all these stories of parents who had tough times with babies and colicky babies and were up all night. And we just had a bundle of joy.

LOREN ENG, ARYA’S MOTHER

And I just remember the first day at the hospital, breaking down into tears because I remember visualizing her first day at preschool, her first day at kindergarten. And then, you know, kind of fast forwarding it and graduating from high school, graduating from college. And then, you know, walking her down the aisle. And then losing her to some unknown person for her to start her own family. And I just remember crying, ’cause I said to my husband, someday we’re not going to have her. She’s not gonna live in our house and be with us.

DINAKAR SINGH, ARYA’S FATHER

She was a little bit late in rolling over, just a little. Maybe a month. And we had our usual monthly doctor checkups. And we talked to the doctor about that. He said, you know, she has hypotonia, which I guess is a fancy word for, you know, softer muscles. But, to not worry much about it, wasn’t really a big deal. And just watch and make sure that she was hitting her milestones.

LOREN ENG, ARYA’S MOTHER

Eventually she got to hitting all the milestones within a week or two. So it’s what most doctors call “late normal,” within kind of what is standard. And so we didn’t spend too much time worrying about it. She pulled herself up to stand. She crawled. She sat on her own. She could sit up. All those things.

DINAKAR SINGH, ARYA’S FATHER

We talked to doctors and they said, look, what’s the big deal? Some children don’t walk until they’re two. She seems normal. Relax, enjoy, you know, enjoy being a parent.

LOREN ENG, ARYA’S MOTHER

She was about a year old and she was walking but her gait was not normal. It was difficult for her to walk, kind of stick-straight, like a little marionette or toy soldier. And so we started getting concerned at that point. But it was a very tumultuous period in our life because we literally were told that we had to kind of move back to the States. And we were packing up our house. And I was, you know, six months pregnant at the time. And so, we had made an appointment to come back to the States and have her go see a doctor.

DINAKAR SINGH, ARYA’S FATHER

And so, we started seeing doctor after doctor. And, you know, right in the midst of that, September 11th happened and the city was shut down for a while. And so, it dragged everything out maybe even longer.

LOREN ENG, ARYA’S MOTHER

Finally, I’m in this orthopedic surgeon’s office. And, you know, he looks perplexed. And he looks like there’s something wrong. And, you know, he proceeds to go and call the neurologist. And I asked him if I could sit in on it and he said, no. And so I left the office not knowing what was wrong with her. And my husband calls him up afterwards to talk.

DINAKAR SINGH, ARYA’S FATHER

And he said, “Well it’s gonna be either congenital myopathy or spinal muscular atrophy.” So, I looked up the whole range of diseases and for some reason, I guess I thought I had seen some place that SMA doesn’t affect girls. And so, I seemed totally convinced it wasn’t that. And also, congenital myopathy just means genetic muscle weakness. And it’s pretty common. And so, that’s what we were focused on. And so, we were just really shell-shocked because we thought, God, if she has this, she might have a tough time walking. You know, and all those visions of, you know, walking your daughter down the aisle, her going off to her prom, seemed like they were, going away in some ways. What the doctor recommended was to go and get a blood test done and have the DNA tests done on it, which would give us the answer.

LOREN ENG, ARYA’S MOTHER

We literally sat around waiting for four weeks. And waiting and waiting and waiting. And during that period, I remember we were making a videotape for my parents. And I saw things that she was able to do when she was nine months old, like crawl really fast and pull herself up to stand and roll over really fast. And all of a sudden, it was this horrible “ah ha” moment of recognition when you objectively have to acknowledge the fact that she not only was not developing normally, she actually lost function. Two days before my child was born, my second child was born, I get a phone call from the neurologist. And he says, your daughter has spinal muscular atrophy. And I just remember being in shock because I don’t think we had prepared ourselves emotionally, for that outcome.

DINAKAR SINGH, ARYA’S FATHER

And, you know, one of the moments that just gets burned into your mind. I was at work. My wife had called. I answered the phone. And I could tell that she was crying the second I picked up the phone. And I think, after that, you didn’t really need, well, it was pretty clear what the news was. This was just about the worst thing that it could’ve be. In fact, well, full-stop, it was the worst thing it could have been. And in the scheme of things out there, you know, untreatable, incurable, fatal, all those words were jumping out at the forefront at this point.

LOREN ENG, ARYA’S MOTHER

Just really couldn’t digest it all. I mean, I think we were exhausted. We were confused. We were tired. We were sad.

DINAKAR SINGH, ARYA’S FATHER

This was a Wednesday. Loren was due to deliver on Friday. And over the next, you know, 36 hours, we basically were, first, just in shock. Because however much we had worried about things to that point, and we had been worrying the last month or so, this was worse. We had, I guess I had sort of prepared myself that, well, maybe if she’s gonna have a tough time, maybe she wouldn’t run. Maybe, I wouldn’t get to play tennis with her. But that’s a world of difference from just not knowing, well, what the next day is gonna bring and whether or not you’ve got two months, two years, 20, 30.

LOREN ENG, ARYA’S MOTHER

And then I remember going to the hospital the next day to go get the C-section. And we’re in the waiting room. And there’s all these really happy, joyous parents there. And I was just sobbing. And these nurses had no idea what to make of me.

DINAKAR SINGH, ARYA’S FATHER

When they put my son in my arms, I didn’t know whether or not this was going to be at least a step forward and a great blessing or this was going to be just the end of the world. And so, we had two, three weeks before the tests would come back, saying whether he had it or not.

LOREN ENG, ARYA’S MOTHER

The big picture is, the months are flipping by on the calendar and, you know what? Corpses of babies are piling up on the other end.

LOREN ENG, ARYA’S MOTHER

We didn’t celebrate his birth in the way that one should as the proud parent of a healthy, wonderful baby. We were obsessed about our poor older daughter and obsessed with the possibility that he might be stricken with the same illness.

DINAKAR SINGH, ARYA’S FATHER

And so, for two weeks, it was Russian roulette. And we eventually got the phone call saying he was okay. And, you know, it really felt like we had won a lottery of sorts.

LOREN ENG, ARYA’S MOTHER

The minute I checked out of the hospital, we literally were packing up the car and taking Arya to specialists around the country to go, again, try and make sense of it all.

DINAKAR SINGH, ARYA’S FATHER

The reality with this disease is that it could take a hundred different forms. It can move, it can hit early. It can hit late. It can move fast. It can move slowly. And no one knows. And if there is one question we just wanted to get the answer to, it was, how much time do we have? What are we talking about, in some ways? It was clear there was nothing they could do. That part was drilled in from the first second. It was clear how the story would, unfold, eventually. But, no one seemed able to tell us when.

LOREN ENG, ARYA’S MOTHER

I had spent a lot of time on the Internet, just looking at the parents organizations for where the state of research was.

DINAKAR SINGH, ARYA’S FATHER

The miracle of it was that actually what scientists were saying was that, look, there’s nothing we can do today, at all. But, seven years ago, we knew nothing about this. Through sheer luck, now, we know far more than we know about other diseases. And you know what? In most diseases, the odds are we’re years from a cure. Here, there’s a real chance that in three years or five years or four years we might be able to find something that might cure or treat this in a way that actually might, maybe not reverse things, but certainly keep them from getting worse. And to us, that was incredible. And it was almost a little scary because having tried to deal with not having a lot of hope, it was almost scary to have, suddenly, a ray of hope show up because you didn’t want to get your hopes up again, only to have them dashed again.

LOREN ENG, ARYA’S MOTHER

Given that the scientists were saying, we are constrained by funding and we can get to a cure but we need more money, I actually wanted to go and try and figure how much money they were getting. And it was an overwhelming shock because if you look at the historical numbers the last two, three years, it’s been hovering around one to $3 million. And, you know, $5 million this year. This is in comparison to the $20 billion budget that they have. And it was absolutely shocking because what it made us realize is that the family groups out there were raising more money than the government was. And these are parents of terminally ill children, who were emotionally strapped, financially strapped, raising more money than the Federal government for this disease.

DINAKAR SINGH, ARYA’S FATHER

We have found scientist after scientist, at NIH, at leading institutions like Columbia, Hopkins, Stanford, saying, look, it’s true. Of all the diseases we look at, this is one that actually might be curable. This is one that we think we can do something about. But it’s coming from nowhere, so it’s gonna take a long time because there’s just no money, there’s no funding, there’s no focus.

LOREN ENG, ARYA’S MOTHER

What we are hearing is that monies that are, in theory, going to go towards targeted research for trying to find a therapy for us, aren’t even gonna be made available until 2004, January. There’s a huge lag in time here. And I think what you’re seeing is, I mean visually, you know, at home, in our home, in the last year, she used to be able to crawl really fast. She’d get up from the floor and pull herself up. She could sit up. She could stand, she could walk. She’s lost all of that in a short 12 months. So, that’s kind of the micro issue. The big picture is, the months are flipping by on the calendar and, you know what? Corpses of babies are piling up on the other end. This disease kills very quickly. Most children die before they’re two. So, you know, in the twoyear lag that it’s gonna to take for money to get to this disease, call it another 500 to 1,000 babies and infants and toddlers will have died.

DINAKAR SINGH, ARYA’S FATHER

I’d hate to think that the way to save your daughter is to go and get a famous face or celebrity involved.

DINAKAR SINGH, ARYA’S FATHER

The problem with this disease is that it hasn’t had a famous face on it. It hasn’t had a recognizable name or an attachment that lets people say, wow, this is a terrible disease and it hasn’t gotten enough attention and we need to fund it. And so, you know, I think it certainly, it does make you a bit cynical. You hate to think that the way to save your daughter is to go and get a famous face or celebrity involved.

LOREN ENG, ARYA’S MOTHER

It’s more posed as a query. You know, when you go and you tell them about the disease, one of the first questions people will say is, does anyone famous have the disease? Or, is there a celebrity whose child has the disease. Because, if you’re trying to get something out into the American public in general, they don’t really care about a motor-neuron disease that affects infants and babies. Michael J. Fox getting involved in Parkinson’s. And Christopher Reeve in spinal chord injuries. They’ve been heroes. I mean, they’ve really done more to move the state of research forward. But, you know, what it has done also, is raise the bar for the rest of the people that’s become the gold standard, in some ways.

DINAKAR SINGH, ARYA’S FATHER

If you don’t have a celebrity, it does seem as if you are going to have to take the slow route. And that’s, awfully hard to hear, when time is not just an abstract concept. Time means, things your daughter won’t be able to do if they find a cure in seven years, not five, not three.

LOREN ENG, ARYA’S MOTHER

It made us feel helpless in some ways. I mean, and this isn’t to say that, look, I mean, if Jennifer Lopez knocked on my door and said, “I’m here to help,” would we turn that away? No way. We would, you know, embrace her with open arms because at the end of the day, that’s the facts of life. That’s how the system works right now. And, you know, with more time in a different life, maybe we would advocate to try and change the system to make it a far more, you know, criteria-driven, egalitarian system. But right now, it’s really marketing oriented and that stinks.

DINAKAR SINGH, ARYA’S FATHER

Emotionally, you try and deal with being told that there’s no cure. You try and deal with being told there’s no treatment. It’s harder to be told that there might be a cure but it’s gonna take us an awful long time to figure it out because we just don’t have the resources.

LOREN ENG, ARYA’S MOTHER

In talking to the scientists at NIH, one of them had made the comment that of the 600 diseases that we follow at this institute, SMA is at the top of the heap in terms of possibility of a cure or a treatment. And when you compare that to where it ranks in terms of funding, there’s this incredible disparity that again, evokes shock and horror and anger and sadness all at the same time.

DINAKAR SINGH, ARYA’S FATHER

There are other diseases, like ALS or cystic fibrosis, that are terrible diseases, affect about the same number of people, and get much more than SMA’s getting now. ALS NIH funding is about 30 million a year. Cystic fibrosis is well over a hundred a year. And that makes sense and that’s wonderful. But, ironically here, for a comparably smaller amount of money, scientists think they actually might be able to cure this, which is just different than anything else out there.

LOREN ENG, ARYA’S MOTHER

It’s funny because the bureaucracies and rules and constraints right now in place, in the government and at NIH seem, in some ways, more insurmountable than a deadly disease that has, you know, scientifically been uncrackable until recent years. I mean, isn’t that incredibly boggling? I mean, it just, it’s overwhelming to me.

LOREN ENG, ARYA’S MOTHER

Watching somebody in “My Big Fat Greek Wedding” while everyone else was laughing, I was crying.

LOREN ENG, ARYA’S MOTHER

We don’t go to movies anymore. It’s funny because it used to be such a great escape. And I would love to go to these, you know, romance movies or action flicks or whatever. And I’ve decided that it’s a bad thing for me to do because every time I go to a movie, I walk out sobbing, no matter what the movie’s about. And part of that’s because you sit in this quiet space and you have time to think. And ultimately, your mind just keeps wandering to everything you lose. And, the smallest little thing on the screen prompts you, you know, watching somebody in “My Big Fat Greek Wedding,” while everyone else was laughing, I was crying because it reminds you that your daughter probably won’t have the luxury of, you know, going through a stressful wedding scenario.

DINAKAR SINGH, ARYA’S FATHER

She’s an incredibly special girl. And she’s a happy girl. And she still has a full wonderful life ahead of her. Even if she can’t walk down the aisle herself, well, maybe, there’s still so much in life that there’s there for her. But everyday, every month that goes by, and she loses more that she probably won’t get back, is going to make that life that remains for her, that much more difficult. And that’s why the clock is ticking. Because everyday there’s another dream that gets lost. I don’t care what condition our daughter’s in, we want her around. But there’s no doubt that, if she can stand, if she can, have a great active life in some way, too, that would just be so much better, obviously. We’ll take whatever we can. But if we can get something done here soon for her, for every other child that has this, there’s that much more that they’re gonna have in their lives ahead of them. So, as a parent, you feel panic, you feel urgency. And it’s why every time you meet with someone, whether it’s in Washington, or a scientist, you can’t take, “eventually,” as an answer.

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