The Inaugural Shawn Miller Memorial Run

September 3, 2014
Shawn Miller on his bike.

Shawn Miller on his bike.

Shawn Miller had a big personality. Most people around his small town loved him and he, of course, loved them right back. His brother, Nathan, says that, “All you had to do was call and Shawn was there.” Nathan continues, “He would go out of his way to help his friends and make sure they were happy.”

It was only natural that when Nathan told Shawn about organ donation, his response was, “Well duh. I have no use for my organs once I’m gone. Why the heck wouldn’t I be donor?”

That discussion became relevant earlier this year when Shawn was fatally injured doing what he loved – riding his ATV.  “I was so proud of him for making this decision,” says Nathan. “Knowing that he lives on and helped five others in need is amazing. Shawn is my role model.”

On Saturday, September 6th, the friends and family of Shawn Miller are hosting inaugural Shawn Miller Memorial Run to honor him and his gifts of life through organ and tissue donation. The event will kick-off at 11:00am at Manny’s Pizza in Savanna, Illinois. All proceeds from the event will be donated to Gift of Hope.

To learn more about the event, visit the Shawn Miller Memorial Run Facebook page at http://on.fb.me/1uvqyH8. Inquiries about the event should be sent to Nathan Schnitzler at nschnitzler30@gmail.com.

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“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.”


Through Knowledge Comes the Gift of Hope

April 28, 2014
Deb (left) is an active Advocates for Hope volunteer.

Deb (left) is an active Advocates for Hope volunteer.

“My son, Scott, was funny and crazy,” says Deb Juris. “He was a body-builder and a health nut. He read poetry. He stood guard over me at a Jimmy Buffet concert so I wouldn’t get stepped on. He was kind, warm-hearted, caring and a ‘help anybody’ kind of guy.”

But on February 14, 2004, came the phone call that every parent dreads. Scott had been in a horrible accident. “When we were told the extent of his injuries, we were in denial,” Deb says. The prognosis was worse than poor.

After 9/11, Scott decided to become a firefighter because he wanted to help people. “We spoke a lot about life and death, and he said he did not want to live on life support if anything ever happened,” she recalls. He also told her he wanted to be an organ donor. “Scott said that being an organ donor was sharing your love with others in need and this, of course, is what he was all about.”

The decision to let Scott go was the most difficult Deb ever had to make. “But, ultimately, it was the only decision because it was what he wanted. We let Scott go on February 18, 2004, and by his love for others he became an organ donor.”

Through their association with Gift of Hope, Deb and her family have met many wonderful recipients and learned their stories. “We are truly happy to hear how their lives were changed,” she says. “We pray that Scott’s recipients are doing well and living life to the fullest, just like Scott did.”

As an Advocates for Hope volunteer for Gift of Hope, Deb now shares Scott’s story with many people. “When someone says that one person cannot make a difference, we let them know that, yes, one person can,” she says. She urges her listeners to discuss with their families the benefits organ and tissue donation. “Through discussion there is education, through education there is knowledge and with knowledge comes the Gift of Hope for your fellow man.”


The Best Birthday Gift Ever!

April 28, 2014
Melody with the Advocate Lutheran General intensive care team that treated her during her wait for a heart transplant.

Melody with the Advocate Condell intensive care team that treated her during her wait for a heart transplant.

“Prayers do get answered,” says Melody Hickman McIntosh. On her 40th birthday, she was “barely holding on to life,” and on her 41st birthday she received the gift of life. “In a million years, who would expect someone to die on your birthday to allow you to receive a heart transplant?” she asks. “I can’t explain it. All I know is that prayers do get answered, and this was the best birthday gift ever!”

Melody with her LVAD just days before her transplant.

Melody with her LVAD just days before her transplant.

A year earlier, Melody had suffered a massive heart attack and was on life support. Before the heart attack, Melody was like any other woman. “I was healthy and living life to the fullest,” she says. “My husband and I were excited about starting a family.”

But then the unexpected happened with the heart attack and, afterward, she lay in a coma for nearly a month. “I was on 24-hour dialysis. Everything had shut down,” she says. The healthcare team at the hospital told her husband, Arthur, to gather the family and prepare to say good-bye.

Fortunately, the family did not have to say good-bye. Instead, Melody was transported to another hospital where a left ventricular assist device — a bridge to heart transplantation — was implanted, and she was placed on the heart transplant waiting list.

Melody and her husband Arthur

Melody and her husband Arthur

Melody was on the LVAD for nearly a year when the miracle happened. On her 41st birthday. she received the birthday gift of a new heart. “I’m so thankful, so much so that I want to do something for someone else because someone gave me a second chance at life.”


Peace and Purpose at Life’s End

April 25, 2014
Michelle and Brian

Michelle and Brian

Michelle Bernstein says that organ donation was of utmost importance to her brother, Brian, and, now, to her family as well. “For Brian, donating his organs helped to bring him peace and purpose at the end of his life,” she explains. This is Brian’s story as told by Michelle:

Brian had a tragic car accident in summer 2009, just weeks before his 18th birthday. The accident left him with a rare condition called “locked-in syndrome.” He was completely and permanently paralyzed from the neck down. He could not breathe, speak or swallow and depended on a ventilator and feeding tube to sustain him. Although paralyzed, he still suffered from constant pain. Yet, his cognitive abilities were fully intact. After much practice and patience, he learned to communicate by blinking his eyes and, later, mouthing words. Using these communication techniques, Brian conveyed his wishes to become an organ and tissue donor.

Brian was a fighter and persevered for nine months. However, realizing his situation would never change, Brian courageously decided that the time had come to be removed from life support in a way that his organs could be recovered for transplantation. Generously giving life to others was the one goal he could still achieve.

During his last days of life, Brian got two tattoos. He had the St. Michael the Archangel tattooed on his chest because he wished to be an archangel to those that he would be leaving behind. He also had the Donate Life logo tattooed on his right hand so that everyone paying final respects would see his silent message.

The night before Brian’s death, he consoled our mother saying, “Don’t cry, Mom. This is a good thing. I know what it’s like to suffer and lose hope. But tomorrow someone else will be getting good news.” Then in the hospital, when the organ compatibility tests were done and Brian learned who some of his likely recipients might be, he was pleased, but he responded, “I wish I could help them all.” That couldn’t be done, of course, but he saved and improved several lives by donating his organs and corneas.

photo

In the end, Brian found a higher purpose that he expressed by giving life to strangers and inspiring those around him, while freeing himself from the torment of being trapped inside his own body. Our hearts are broken, and our lives are forever changed, but we will carry his mission forward and encourage those of you reading Brian’s story to do the same.


Gift of Life Unites Rivals

April 24, 2014
The Ehrenberg family

The Ehrenberg family

Terri Guzman is an Advocate for Hope volunteer with Gift of Hope because of the loss of her good friend, Jan Ehrenberg, 15 years ago. “Jan was a teacher, mother, daughter, sister and friend to so many,” Terri explains. And she was an ardent Chicago Cubs fan. In fact, she met her husband at Wrigley Field. But most important, Jan was an organ and tissue donor.

On April 11, 1999, Jan suffered a fatal head injury while playing a game of co-ed basketball. “She fought valiantly for four days, but on April 14th the doctors knew she was not going to recover,” Terri says. That’s when Vince, Jan’s husband, said “yes” to the question of organ and tissue donation. “Please know that telling your family that you want to be an organ donor is showing your generosity to them,” Terri says. “You can give comfort to your family that even in your passing you live on.”

After Jan’s death, her friends and family established the Jan Ehrenberg Scholarship Foundation (JESF) to continue Jan’s legacy as a teacher. Raising funds brought Terri to an event where Chicago White Sox players were signing autographs. “I am a true-blue Cubs fan, just as Jan was, so this was a stretch for me,” Terri says. But she had a baseball to be signed for the benefit, so she stood in line holding some brochures for JESF.

Jan and her kids

Jan and her kids

That’s when she met Mike Papineau, who asked about the brochures. Terri told Mike about Jan, and Mike told Terri about his kidney transplant. They shared the information they knew about dates and donor/recipient details. “We both knew right there what had happened,” Terri says. “I had randomly met my friend’s kidney recipient.”

Mike’s family and Jan’s family met a few weeks later — a group of die-hard Cubs and White Sox fans together at a barbeque. “They joked about the irony of the Cubs/Sox connection,” Terri recalls. Later they made a friendly wager: If the Cubs won the cross-town series, Mike would wear a Cubs hat at the JESF Golf Outing, and, if the Sox won, Terri would wear a Sox hat. The Cubs won.

In 2005, after five years of Cubs outings, JESF decided to do a Sox game instead. “Mike brought lots of friends,” Terri says. And strangely, later that year, the Sox won the World Series. “I think Jan had something to do with that,’ Terri says.


Two People, Three Organ Transplants, Immeasurable Gratitude

April 23, 2014
Donna Ramusack -- an advocate for the Hospitals for Hope campaign.

Donna Ramusack — an advocate for the Hospitals for Hope campaign.

Donna Ramusack has been a registered nurse for 50 years, but none of her training prepared her for medical challenges she faced in her own family. The first came when her daughter, Leslie, was diagnosed with dilated cardiomyopathy and learned she needed a heart transplant to live. “Her diagnosis sent shockwaves throughout our family,” Donna says. “Could this have been prevented? Would her name ever make it off the transplant list?”

They also wondered if other family members would face similar fates. Leslie was fortunate because, after being listed with a major transplant center, she had to wait only two months to receive her heart transplant on April 1, 2001. After her daughter’s recovery, Donna said she thought her family had put the worst of the disease behind them. “But I began to experience the same symptoms of breathing difficulties and fainting spells that I had watched my daughter battle,” Donna says.

After a complete workup at a transplant center, Donna was told that, in addition to a new heart, she also needed a kidney transplant. “I was fortunate to receive transplants after seven days on the transplant list,” she says. They both came from the same donor. It was June 17, 2004, only three years after her daughter’s surgery.

The Ramusack family

The Ramusack family

“I feel profound gratitude to my donor’s family,” Donna says. “I know that a difficult and emotional decision was made by the families for both of us.” Just eight days after surgery, Donna was discharged to begin rehab. “I credit my stellar surgical team and the nurses for providing exceptional care and helping to expedite my recovery process,” she says. “I also had tremendous support from my husband and family.”

Donna now makes the most out of every moment and never takes the things that life has to offer for granted. “A near-death experience makes you worry less about the little things and focus on the things that are important,” she says. “Life gives you may challenges, and you can either go down in defeat or rise up in victory. My daughter and I chose the latter.”

Donna is now an Advocates for Hope volunteer with Gift of Hope. She is promoting organ and tissue donation at the hospital where she works and at churches, schools and other organizations. “I find there are still many misconceptions about donation, and I hope to calm those fears,” she says. “I wouldn’t be here today if it wasn’t for that gift of life made by my donor family 10 years ago.”


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