Peace and Purpose at Life’s End

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 18^th 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.

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

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 14^th 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

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

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

“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.”

The Gift of Life: Better Than Any Diamond

Latrisha and her boyfriend Chris

Better than any diamond, Latrisha Beckwith received the ultimate gift of love from her boyfriend, Chris, on Valentine’s Day 2012.

“Most girls get a ring. I got a kidney,” she says with a smile.

The couple met two years before, soon after Latrisha relocated to Chicago from California. Stress from the move, finding a job and adjusting to a new city left her feeling ill with little energy left over to think about dating.

“Love was the farthest thing from my mind, but Cupid was already busy working,” she recalls. “I fought it, but Chris was vehemently persistent as if he knew something that I did not.”

Latrisha found a job, but she continued to feel ill. During a health screening at work, her blood pressure was alarmingly high. She was admitted to a hospital, where tests showed she had been living with lupus for some time. The disease left both kidneys with minimal function. She was just 30 years old.

“Chris and I had only been together for four months,” Latrisha says. “I didn’t expect him to stick around after all of the physical changes, like the loss of my hair due to medication. But he proved me wrong. He was with me at the hospital every single day.”

Chris even offered to donate his kidney: He was a donor match.

Latrisha and Chris on Valentine’s Day prior to surgery.

Instead of pursuing that course, Latrisha, a “silent skeptic,” decided to sign up for the organ transplant waiting list, preparing for a wait of three to five years. Nearly two years of challenging and draining dialysis treatments followed. She tired easily and had to coordinate her life around dialysis treatments and restrictions needed to stay alive.

By Valentine’s Day, Latrisha decided to accept Chris’s offer, her name was officially removed from the transplant list and Chris gave Latrisha the gift of life as a living donor. The two recovered well from the surgeries, and Latrisha has noticed a remarkable difference since receiving her transplant.

The final glance between Chris and Latrisha prior to transplant.

“I’ve got get up and go now,” she says. “Before, I would get tired walking a few blocks or even up a flight of stairs. Now, I feel better than ever. I enjoy life without limits.”

Latrisha says she wants to share her story and make people aware of the urgent need for donors. “Every 10 minutes, another name is added to the national organ transplant waiting list, and more than 120,000 people, including 5,000 in Illinois, are waiting for transplants. Sadly, 18 people die each day waiting.”

Everyone can help by becoming a registered organ and tissue donor, Latrisha says. “Say ‘yes” when you get or renew your driver’s license or register your decision at GiftofHope.org.”