“We Have to Dispel the Fears”

April 29, 2014
Sonji Woods

Sonji Woods

Ten years ago, realtor and U.S. Army Reserve veteran Sonji Woods was planning her wedding. Business was great. “I was just starting my life,” she recalls.

That’s when her doctor told her that her kidneys would eventually fail. She didn’t feel or look sick. She went on with life and wedding plans. But in November 2007 she woke up one day with dizziness that only grew worse. She drove to the hospital and was immediately admitted. “I was told I had enough toxins in my body to kill a six-foot, 220-pound man,” says petite Sonji, who stands just 5’2.”

She was put on kidney dialysis the next day. “It was a shock because no one in our family had ever suffered from kidney disease,” she says. “I was always thin, I was active and I ate right most of the time. How could I be diagnosed with a life-threatening disease?”

Without other physical issues, Sonji was told she was an excellent candidate for a kidney transplant. But her heart sank at learning it might be years before a kidney donor became available. She wondered: “Could I be on dialysis that long and maintain a decent quality of life? Would I even live that long?”

Over the next four-and-a-half years, Sonji suffered multiple internal infections, severe fatigue and anemia. She endured extended hospital stays and allergies from the drugs required to treat her infections. Her appearance changed. “It was bad! It was just as hard on my family. My marriage took a hit. But my mom stepped in, and she has been phenomenal.”

In what felt like the nick of time, Sonji says, the telephone call came: A kidney donor was available. She underwent a kidney transplant, and today, “I have gone back to full-time real estate sales, and I am doing great!” she reports.

As an Advocates for Hope volunteer for Gift of Hope, Sonji spreads an important message. “We have to dispel the fears and negative moral stigmas attached to organ and tissue donation, especially in our minority communities,” says Woods, who is African-American. “Minorities make up the largest group of people needing organs, so we should be the largest group of donors.”

Even before she needed a kidney transplant, Sonji had “organ donor” on her driver’s license. “I knew I wanted someone else to have my organs. Six years is just too long to wait for a lifesaving organ.”

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Donor Chain Creates Links to Life

April 2, 2014

 

Kasci saved Camille's life by anonymously donating her kidney.

Kasci saved Camille’s life by altruistically donating her kidney.

“To watch Camille run around like a perfectly healthy five-year-old was an experience I’ll never forget,” says Kasci Bedessem. “Knowing she can do that because of me is an incredible feeling.”

Kasci decided to participate in a donor chain in April 2011, but she didn’t realize the sense of urgency for a special little girl who had lost most of her kidney function in 2009.

“I had never met Camille,” Kasci says. “I knew nothing about her, not even her name, when I chose to donate. All I knew was that I had two healthy kidneys and could live with just one. I could give the other one to someone who needed it. I could save a life.”

Camille was born prematurely, about 17 weeks early, in October 2007. She spent five months in the pediatric ICU before being allowed to go home. Her kidney function was at 25 percent, and she needed to receive oxygen from that point on.

By her second birthday, Camille’s body had outgrown her kidney’s ability to adequately perform. Her kidney function had fallen to 15 percent, and her doctors put her on the kidney transplant waiting list.

Camille’s father tried to qualify as a donor, but he was rejected. Her mother also underwent the rigorous testing process and was deemed a suitable donor. But she was incompatible with Camille.

Although Camille’s mother was not a match for her daughter, she was potentially compatible with another person waiting for a lifesaving kidney transplant. That meant she could be part of a kidney donor chain where her kidney would be given to someone in need and, in return, Camille would get a kidney that matched her needs

Camille and her mom were listed on the National Kidney Registry, which looks at information nationwide to match donors and recipients, in July 2010. In April 2011, a matching donor for Camille was found, meeting a host of requirements, and a chain of nine donors and nine recipients was painstakingly organized. But Camille caught a cold, and the surgeries were postponed.

A week later, eight of the nine surgeries were scheduled. The lone exception was Camille’s. Her surgery eventually was scheduled in June 2011. The donor for the three-year-old? Kasci Bedessem, an altruistic living donor.

Kasci after her kidney donation.

Kasci after her kidney donation.

Kasci was thrilled to meet Camille and her family in summer 2013 and see her full of life and ready to start kindergarten in the fall as a normal, happy, healthy girl. “It’s very likely that Camille never would have gotten her kidney if I hadn’t decided to be a living donor,” Kasci says. “I saved her life, and I indirectly saved the lives of the eight other transplant recipients in the donor chain. I am proud and privileged to be someone’s hero.”

Other people can be heroes, too, as registered organ and tissue donors.


Social Media Helps Mom Find Kidney Donor for Daughter

December 3, 2008

An amazing thing happened last month. A young girl’s life was saved thanks to the power of the Web.

On November 12th, a Mom in New York named Lisa posted about her daughter’s need for a living kidney donor to help save her life. In her post, Lisa issued a plea to all her blog readers to fill out a donor eligibility questionnaire in the hopes of finding a potential donor for her daughter, Marielle. The post prompted 189 comments and spurred readers to action.

The original post above seeped out to Lisa’s 418 followers on Twitter (microblogging service with over 5.5 million users…you can follow DonateLifeIllinois on Twitter as well) who helped spread the call to action to hundreds of others. You can see the activity here on search.twitter.com where you can trace back everyone who helped pass on the info through their own Twitter updates. Quite mesmerizing.

Marielle’s condition continued to deteriorate but we later learned from Lisa that a donor match was found and an update earlier this week reports on Marielle’s adjustment and recovery progress.

It’s truly a sign of the times as we think about how the Web and different social media tools enable us to connect in such a simple, fluid fashion and build communities of support.

Our best to Marielle for a swift recovery with her new gift of life this holiday season!

-Scott

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“Because” – The Story of an Organ Donor

October 3, 2008

Back in May of this year, Amanda Gedraitis reached out to us on MySpace to submit her entry to be featured as part of our Illinois Donor Diaries. Like many of our entries, we were taken aback at the amazing job Amanda had done in writing such a compelling, powerful piece.

A few weeks ago, we set out to put stories like Amanda’s on film to feature during October and November as part of the 2008 Campus Challenge. Currently a student at Illinois State University, Amanda felt compelled to act on the lack of registered donors nationwide by becoming the youngest recorded non-direct living kidney donor.

Be sure to check out the video below and feel free to share with anyone!

Happy Friday,
Scott

“Because” – The Story of an Organ Donor

Link to video:  http://www.youtube.com/watch?v=PKn-IdsNZ1U


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