Today is Jenny's funeral. I could wax on about the unfairness of today, buy my friend Elizabeth who gets paid to do just that has done a much better job than I ever could, please read on:
Make a miracle happen: Become an organ donor
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. 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 perhaps 14 years old instead of a woman in her 20s. Jennie and Selena came to St. Louis from Chicago to wait for lungs, and eventually they were rewarded.
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. In Kimmswick, Mo., a little town along the Mississippi with famous levee-high pies, 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.
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. We had to be quiet when Jennie spoke because she did not have enough breath to shout. 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, including my son, because we needed a miracle to happen. Jennie was getting weaker every day as we waited for lungs.
And waited.
There are more than 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. 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 has checked "organ donor" on her forms since she was 17, 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 you need to do more than that to become an organ donor -- you should discuss it with your family and register with the Illinois Secretary of State's office. If you haven't done so since 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 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. 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. 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 and 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.
Elizabeth Donald is a News-Democrat reporter and a friend of Jennie Sutton
1 comment:
Over half of the 100,000 Americans on the national transplant waiting list will die before they get a transplant. Most of these deaths are needless. Americans bury or cremate about 20,000 transplantable organs every year. Over 6,000 of our neighbors suffer and die needlessly every year as a result.
There is a simple way to put a big dent in the organ shortage -- give organs first to people who have agreed to donate their own organs when they die.
Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. People who aren't willing to share the gift of life should go to the back of the waiting list as long as there is a shortage of organs.
Anyone who wants to donate their organs to others who have agreed to donate theirs can join LifeSharers. LifeSharers is a non-profit network of organ donors who agree to offer their organs first to other organ donors when they die. Membership is free at www.lifesharers.org or by calling 1-888-ORGAN88. There is no age limit, parents can enroll their minor children, and no one is excluded due to any pre-existing medical condition.
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