The limitations of genetic testing: how a mom was told her son with Down syndrome would run the New York City marathon

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This past weekend was the New York City marathon. Among the 50,000 runners was Jimmy Jenson, who no one could have expected he would be there on the day he was born. 

Dateline 1965: A doctor is delivering a newborn baby boy.

Doctor, is everything okay? I want to see my baby.

In a moment, we are examining him.

“Examining him.” Why? What’s wrong?

[The doctor clears the room]

Unfortunately I have some sad news.

What is it, doctor?

Your baby boy is a mongoloid.

[the new mom begins to weep]

I know, ma’am. I’m sorry. But we have some new testing that can tell us things about your son’s life. Do you want to know?

I don’t know, Doctor. Like what can it tell me?

Well, first off, there are several fine places where you can send your son, Jimmy, off to and they will take care of him. You can go home and try again and just tell your friends and family that Jimmy didn’t survive the birth. Many other parents do this and have done so for decades. … But the testing can tell you more.

What? What will it tell me?

Okay, first, Jimmy will go to a group home when he is only 8 years old. Because people with Down syndrome–that’s the new name for mongolism–often have low muscle tone, it will be harder for Jimmy to exercise. And, so, like many people with Down syndrome, he’ll become overweight.

Obese and retarded–oh, how awful. He’ll be all alone. Who will want to spend time with my son?

That’s understandable. And, maybe because of being ostracized, Jimmy will sit cross-legged and not interact much with people.

Doctor, this is just too much. I don’t know if I can hear any more. Does it get better?

Surprisingly, yes. Jimmy will meet a beautiful young lady and will get involved in an organization called Best Buddies.

“Best Buddies?”

Yes. Sargent Shriver and Eunice Kennedy Shriver’s son, who was just born, will form Best Buddies when he grows up.

You mean President Kennedy’s sister and her husband who led the Peace Corps?

The very same. Mrs. Shriver will go on to start Special Olympics, where people like Jimmy compete in sports all around the world. Their son Anthony will start Best Buddies to match normal people like you and me with people like Jimmy.

So, this Shriver boy will be the same age as Jimmy and start this charity to help people like Jimmy? Hmm. What will these “best buddies” do?

I expect a variety of things. But, in Jimmy’s case, his best buddy will be the young lady I told you about, whose name is Jennifer. And, it will be Jimmy who suggests they go on a run together.

Why would he do that? He’ll be overweight; slow; it’ll be so hard for him–I don’t even like running.

Who does, except for those swept up in the jogging fad? But, Jimmy will be the one who wants to go running.

Do they, doctor? Does Jennifer go running with him?

Yes. And, they don’t stop with just that first run. They go on more runs and longer runs. And, as they run, Jimmy starts to lose weight–almost 70 lbs. They run so long that Jimmy will participate in the Los Angeles marathon.

Oh my word! A marathon.

But, it will be just his first marathon.

His first?

Yes. Because in 2013, Jennifer and Jimmy will travel to run with 50,000 others in the New York City marathon.

Does he finish?

He does. It takes him a while–over 8 hours–but he does finish.

Eight hours? What time did Jennifer finish in?

The same.

The same? But she doesn’t have Down syndrome.

No. But she will run the whole marathon with him.

You mean my son, the son who doesn’t interact with people, the son who gets overweight, will spend 8 hours running with a pretty women through New York City when he’s 48?

That’s what they’ll do. And, that’s not all.

What else, doctor?

Jimmy won’t just finish the marathon. He’ll encourage others along the route to keep running, telling them if he’s not quitting, neither can they. And, that will lift them up and they’ll keep running.

My Jimmy will help others? He’ll inspire them?

Not just the other runners. His story will be covered by NBC’s TODAY Show.

The TODAY Show! But I watch that. You mean, people all over the country will see my son?

Yes, they will. And, he’ll inspire them, too.

That’s some testing, Doctor, that can tell a new mom all that.

Indeed it is.

I hope other moms will find out all that their child can do when they’re told their baby has Down syndrome.

I hope so, too, ma’am.

Comments

  1. Wow. Thank you. Beautifully and thoughtfully written; ironic without a hint of heavy sarcasm. I just love it.

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