published Sunday, October 23rd, 2011

Kennedy: Daves family rallies for Shafer

When last we visited the Daves family of Ooltewah, back in May, they were hoping for a happy ending.

The youngest of Kevin and Jada Daves' five children, 2-year-old Shafer, has a rare, life-threatening condition called Denys-Drash syndrome, which attacks the kidneys and often leads to cancer.

In June, Ms. Daves donated a kidney to Shafer at Vanderbilt University Medical Center in Nashville. As an organ donor, she was a perfect match, a turn of events so mathematically improbable that it has befuddled medical experts and attracted national media attention.

Today, Ms. Daves has recovered from the surgery and is trying to ease back into her career as a professional speaker. Shafer, meanwhile, seems to be tolerating the transplanted kidney, although he must take liquid through tubes every two hours to keep the adult organ healthy.

CNN and USA Today, among other national media outlets, have told the Daveses' story, which one writer dubbed, "The mother who gives life to a son for the second time."

When writing human-interest stories, reporters grope for happy endings, sometimes supplying one even as the real narrative is not quite so tidy.

When I talked to Ms. Daves last week, she was just back from a family trip to Disney World, a gift from one of the many people who have been moved to big-heartedness by Shafer's tender story. (The other four Daves siblings, all age 10 or under, say they will each donate a kidney, if needed, to get Shafer to adulthood.)

Ms. Daves showed me a photograph of the family with Mickey Mouse and Minnie Mouse. Little Shafer, a tow-headed charmer, was on his Daddy's hip.

"I would not take $100,000 for this picture," Ms. Daves said.

That's what it's like with a chronically ill child. Somewhere between resignation and relief is the peace that passes understanding. It's a cliché, but living in the moment becomes second nature.

"There's never a spot to exhale," Ms. Daves said. "People think it's all over. They don't get that it's a lifelong journey."

Ms. Daves knows that the big moment she once yearned for, the fear-cleansing sigh of relief after her son has been cured, might never come. Instead, she celebrates small milestones -- such as the whole family gathered at Disney World -- with a passion most parents reserve for births and weddings.

Although there are hopes that the kidney transplant will extend Shafer's life for years, if not decades, there is no guarantee that things won't spin out of control tomorrow.

On the day the family was packing for Disney World, Shafer awoke with a 102-degree fever, a complication that nearly derailed the whole trip. Ms. Daves, usually a rock of energy and exuberance, broke down crying.

Her 10-year-old daughter, Shayli, comforted her, using some of the phrases that Ms. Daves recognized as her own standard slogans of strength: "Mommy, God didn't bring us this far just to let us down," Shayli said.

Strangers tell Ms. Daves that her children show maturity beyond their years, a quality she attributes to living through Shafer's health battles.

In fact, the 2-year-old child changes lives wherever he goes, Ms. Daves says.

"I'm a different person because of him," his mother says. "I don't take a minute for granted. I live for now. I watch my words. I seek to be more kind, more considerate."

On the family's recent trip to Disney World, one of their benefactors was an old man whose body is wracked by cancer and heart disease. As he was giving the family tickets to the park, he tried to press a $100 bill into Ms. Daves hand to buy souvenirs for the children.

She pushed his hand away, pleading that he had already done enough.

"Please, don't take away my blessing," he said patiently but sternly.

It's a suitable six-word plea for all of those who lift prayers for little Shafer.

about Mark Kennedy...

Mark Kennedy is a Times Free Press columnist and editor. He writes the "LIfe Stories" human interest column for the City section and the "Family Life" column for the Life section. He also writes an automotive column, “Test Drive,” for the Business section. For 13 years, Kennedy was features editor of the newspaper, and before that he was the newspaper’s first Sunday editor. The Times Free Press Life section won the state press award for ...

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LIFESHARERS said...

The generosity of live organ donors is wonderful. It's a shame we need so many live organ donors. Americans bury or cremate 20,000 transplantable organs every year.

There is another good way to put a big dent in the organ shortage -- if you don't agree to donate your organs when you die, then you go to the back of the waiting list if you ever need an organ to live.

Giving organs first to organ donors will convince more people to register as organ donors. It will also make the organ allocation system fairer. About 50% of the organs transplanted in the United States go to people who haven't agreed to donate their own organs when they die.

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. LifeSharers has over 14,800 members, including 504 members in Tennessee.

Please contact me if your readers would like to learn more about our innovative approach to increasing the number of organ donors. I can arrange interviews with some of our local members if you're interested. Please let me know if you have any questions. David J. Undis, Executive Director of LifeSharers at www.lifesharers.org 6509 Cornwall Drive Nashville, TN 37205 phone 615-351-8622.

October 23, 2011 at 11:19 a.m.
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