Sequenom Playing God...Well not yet!

Sequenom - a biotech company - has recently tumbled from a market cap of around a billion dollars (six months ago) to about US $ 200 million.  The reason - its most prominent pipeline product (a pre-natal blood test to diagnose down syndrome) seems to have run into trouble due to "mishandling of results".

While arguably this is not the last such attempt we have seen, I am tempted to imagine a hypothetical scenario that such a test was available when my little angel, Shikha, was born.  Had I and my wife known, before her birth, I have no doubt we would have opted for abortion  (A painful truth that I find extremely difficult to confess to).  However, having been through all the experiences over past thirteen years, I believe that would have been our worst and most unfortunate decision. 

The decision we would have taken before Shikha's birth would have been based on our ignorance.  Such a decision would have robbed Shikha her right to be born and realise her potential.  That would have been such a tragedy.

It, therefore, disturbs me to imagine the world after several decades from now.  Possibly there would be no persons with Down Syndrome on this earth.  A diagnostic test would be discovered; which every expecting mother would be advised to undergo; and upon testing positive they would be "counselled" on why it makes sense to not pursue with the pregnancy.  Given the increasing pace and stress we all face in our lives, why would anyone agree to take so much pain to bring up a child that requires so much care, attention, efforts, costs and emotional energy.

Extend this scenario to various other conditions.  Are we increasingly looking to "homogenize" our species?  Anything that is "different" is getting "differentiated against".  When a child with Down Syndrome becomes an undeniable reality, we preach "acceptance".  However, when faced with a choice, we would opt to prevent them from taking birth.

A society that counts its costs towards growing and "maintaining" persons with special needs; does not blink while investing billions of dollars into companies that would prevent their birth.  After all, the mathematics driving these investments is mind-numbing.  Imagine each expecting mother going through these preventive tests.   How can you beat these numbers with the "emotional value" that the persons with Down Syndrome add to our society?  How can you beat these numbers with the "richness" that the parents and families experience in their lives?  How can you beat these numbers with the noble idea of "inclusion" and "sensitivity" that every child with Down Syndrome is an ambassador of?  How can you beat these numbers with the innocent and infective smile and happiness these persons bring for everyone they touch.

Some would argue about the possibility of an alternate scenario where parents get to know of "the truth" and yet opt for pursuing with the pregnancy.  Well there are several such notable examples (like Steve Moser whose lyrics I had reproduced in a previous blog) but these are more of an exception than the rule.

So, I have come to a rather painful and harsh conclusion that by investing in Sequenom and other such ventures, we are investing in death of persons with Down Syndrome.  Here is me silently hoping against hope that the attempts by Sequenom and other such companies do not ever succeed!

I consider it to be poetic justice that on the same day, i.e. 28th September you had the news of the CEO of Sequenom and a few others being made a scapegoat and the company's fortunes tumbling; and on the other hand, a person with Down Syndrom (Pablo Pineda) won the best actor award for his role in a Spanish film. 

May there be more Pablo Pinedas in the time to come.  Amen!

Pablo Pineda shows the way!

Pablo Pineda is an actor.  Three days back, he won the best actor award at the San Sebastian film festival for his role in a film Yo Tambien.  He has a major degree from a regular university in Spain.  Incidentally, he is a person with Down Syndrome.

Seven years ago, in an interview this is what he had to say:

"I am just doing my part and demonstrating that I am as competent as anyone."

"I want to work. Where... we will see. As everybody else I want to work in my field, in the area of education. "

"I would like to become an example. I want to demonstrate that if one puts into work whatever one is able, you can do what you want. But beside what I was able to achieve, I also expect society to do its part. I do not want this to be a one way effort. This is a start of success and shows people that we are as competent as the rest. If you are the one who is setting up the barriers, you are then destroying possibilities for others. And, on the other hand it is essential for society to understand all of these things. "

Indeed, he is an example of what children with Down Syndrome can achieve if accepted by the socity and given an opportunity.

Here is to Pablo Pineda for his brilliant achievements and, more importantly, showing the way to the society and to all persons with special needs.

Heaven's Very Special Child

Here is a fantastic poem by Edna Massionilla that has inspired many a parents, myself included, in their quest to come to terms with that little gift from God.

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.