Reprinted from abcnews.com.

Arya Singh
(ABCNEWS.com)
UpClose: Arya Singh
 
ABCNEWS.com
Jan. 21 óWhat Christopher Reeve has done for spinal cord injuries and Michael J. Fox has done for Parkinson's can't be fully measured. Dinakar Singh and Loren Eng can only hope to get the same kind of attention for their daughter's disease. Attention means money. And for Arya Singh, time is of the essence.


UpClose tonight, Jan. 21: Arya Singh

What Christopher Reeve has done for spinal cord injuries and Michael J. Fox has done for Parkinson's can't be fully measured. Dinakar Singh and Loren Eng can only hope to get the same kind of attention for their daughter's disease. Attention means money. And for Arya Singh, time is of the essence. Independent Producer Laura Palmer produced tonight's UpClose:

Long before the current crop of reality TV shows began its assault on the least common denominator, "Queen for a Day" may have set the bar as one of the most appalling programs of all-time. In this fifties hit, four women with terribly sad lives told their stories and what they hoped to win to make their lives easier. The family with crippled twins needed a washer and dryer; the wife whose husband had been bedridden for thirty years hoped she could snare a television to make his days a little brighter. At the end of the program, the studio audience applauded for each woman, and an "Applause-O-Meter" determined the winner. The three other women tried not to look as grim and humiliated as they felt.

I was reminded of "Queen for a Day" while working on tonight's broadcast because a similar system seems to help decide how funding is allocated for disease research in this country. In the updated version, celebrities speak on behalf of a disease, and their individual luster sends the "Applause-O-Meters" on Capitol Hill off the charts. Before you know it, dollars are flowing into one or another disease research effort.

Cynical? Watch tonight's broadcast and see if you are not convinced that there is really something terribly wrong with the system. Parents, who are running in a race against time to save their daughter's life, are told that the best thing they could do is to find someone famous who has the disease or, in the very least, is willing to be a spokesperson for it.

Loren Eng and Dinakar Singh are the parents you'll meet on tonight's UpClose. But it's their daughter, Arya, who is the star of the broadcast. She is the youngest person we've profiled on UpClose and one of the most enchanting, radiantly beautiful and exhuberantly alive people you could ever expect to meet. Her little life brims with wonder, laughter and joy.

Arya has an awful disease called Spinal Muscular Atrophy, or SMA, that most people have never heard even mentioned, though it's nearly as prevalent as Lou Gehrig's Disease or Cystic Fibrosis. That's the problem. Unlike many lethal diseases, scientists know what causes SMA and have a good idea of how to treat, if not cure it. With just a few more years and a lot more money, it may be a manageable illness. But right now, the money isn't there. And Arya Singh's and thousands of lives, mostly children's, hang in the balance.

So Loren Eng isn't really joking when she daydreams about J-Lo showing up at her door to offer her name to the cause.

If you want to learn more about SMA, please check our UpClose website (www.abcnews.com) where we'll post links to the web sites that focus on SMA.

Richard Harris
Senior Producer
Nightline UpClose

 

 

SMA Support Website Directory Graphic