Miracle Girl

They say if you fold a thousand cranes, you can make a miracle happen. And we called her Miracle Girl.

Jennie Sutton had cystic fibrosis. Her lungs destroyed themselves from the inside out, and by the time I met her and her mother, Selena Rochlis, she was already on the transplant list. The disease had robbed Jennie of an adult body, so petite and whisper-thin that at first I thought she was maybe 14 years old instead of a young woman in her 20s. Jennie and Selena came to St. Louis to wait for lungs, and after a long, hard wait, they were rewarded with that precious gift.

Jennie's transplant went very well, and for a time, we got a glimpse of a Jennie without disease. She could walk without help, could go out without an oxygen tank. Friends took her to a little town along the Mississippi with famous levee-high pies, and Jennie relished the ability to walk about the town unaided, finally free.

She was going back to college, she told me. Her dream was to work in early childhood education, if her health would allow. Any job allowing her to work with children made her happy.

But Jennie's freedom was short-lived. Last fall, her body began to reject the new lungs, and soon the doctors said there was no way to stop it. Jennie needed new lungs again.

Jennie hesitated at first to go through the process again. But in the end, she decided to fight.

On the one-year anniversary of her transplant, her re-birthday, we gathered to celebrate with Jennie. We had to be quiet when she spoke, because she did not have enough breath to speak over us. She told us she had been accepted back onto the list as a good candidate for a transplant.

That's when we started to fold the cranes.

Drawn from every color and pattern, from origami kits bought at stores to random pieces of paper. Nearly everyone folded the cranes, because we needed a miracle to happen. Jennie was getting weaker every day. My son learned how to fold cranes while joining the assembly line for Jennie, as we waited for lungs.

And waited.

There are 100,000 people on the transplant list and every organ donor could save as many as 50 lives and there still aren't enough.

You do the math.

As long as I've known her, Selena has worn the kelly-green ribbon for organ transplant awareness. She was a mother who had spent much of her life fighting for her daughter's life. The frustration she experienced is something I cannot imagine; knowing that every day, perfectly good lungs were going into the ground and her daughter was left gasping for breath.

Imagine my surprise, as someone who had checked "organ donor" on her license forms since she was seventeen, to turn over my driver's license and discover that I am not actually an organ donor. I never signed the back of the license, you see.

And it turns out you have to do more than that to become an organ donor - you have to discuss it with your family, preferably in writing, and to register with the Illinois Secretary of State. If you haven't done so since the law changed in 2006, you might not be a donor.

In the end, there were 1,008 cranes decorating the waiting room of Barnes-Jewish Hospital's intensive care unit when Jennie Sutton died Sunday night at the age of 25. She died holding her mother's hand and surrounded by her friends and family.

She died waiting for lungs.

Perhaps, as I told my son, the real miracle was that she got a breath of time without this wretched disease. Perhaps the gift she received was the chance to walk by the river, and perchance to dance. Truly, her pain is over now.

But I am angry. I am furious on behalf of Jennie and Selena, because if we all turned over our licenses there would be no need for a list. There would be no need for Selena to watch her daughter gasp away her last breath as we grieved with her. We are not meant to bury our children; there is something innate in the human soul that forbids such a thing.

So I would ask of you this small favor. Turn over your driver's license and sign it. Then make sure your family knows that this is what you want, and go to lifegoeson.com to sign up. You are not too old or too young, too sick or infirm. They will try just as hard to save you if you are hurt, and they will not push your family into a decision they're not ready to make. If tragedy strikes your family, ensure that it will at least prevent another tragedy from taking place.

Because Jennie Sutton did not have to die.

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Ed. note: This is a reprint of a column I wrote in March 2009, published in the Belleville News-Democrat. I do not usually write columns, but the paper made an exception in this instance. I remain grateful for it, because it is an issue on which I feel very strongly.

As I wrote the day the column ran, "It's just not supposed to be this way. It may be that life is simply unfair, and we are all grownups who know this. But there is something fundamentally wrong about it. Part of being a journalist is tilting at windmills, to shout into the rain when something is fundamentally wrong and people need to know about it. It's cheaper than therapy."

Today was the dedication ceremony for Jennie Sutton's tombstone. I was unable to be there, because I'm working this weekend. But my heart and my prayers go with Jennie's family and my friends who were there, and I hope Jennie's spirit knows how much she is loved and missed.

Comments

  1. I have a document in my health history and a copy in the car, with a note on my driver's license and in my phone to check for it. Basically, it says that anything usable should be used. I've discussed it with anyone who might have to make that decision when it's time and they know my wishes. I'll see if Missouri wants us to register like Illinois does -- but what if I'm in a different state when I die? I don't travel as much as some people, but I do go to various events.... Hmm. Time to d o some research.

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