|
 |
Colby's Story
This is the story of our Foundation's namesake. It is a story of profound loss; but, also of hope...and the healing journey of Colby's family.
On June 3, 1993, 14 month-old Colby, left unattended in the bathtub by a babysitter, slipped under the water and drowned. Despite heroic efforts by medical personnel, Colby died at the hospital. His parents were given time to say goodbye in the hospital room. Colby’s mom, Starla, remembers, “I knew what was going on, but I didn’t want to hear the words.”
Although John, Colby’s father, is a family practitioner he did not immediately think of organ donation during this time of grief. Fortunately a physician had the courage to ask the difficult question: “Would you donate your son’s organs?” Amid indescribable despair, their decision to donate gave the Cassanis a profound sense of hope and added new meaning to Colby’s brief life. It took John and Starla only minutes to agree to proceed with the donation.
Colby’s life was short but his legacy is far-reaching in the lives of those who received his organs. His kidneys were transplanted into a twenty-seven year old man. His liver was implanted in a two year old girl. And his heart was donated to a five month-old boy. All of the transplants were successful.
As some donor families do, the Cassanis reached out to the organ recipient families. They began by writing letters through their transplant coordinators to all the recipients. The family of Brayden, who received Colby’s heart, chose to write in response. On the first anniversary of Brayden’s heart transplant the families spoke for the first time. “Once we started talking, both families realized there was this phenomenal connection between us” Starla stated. When Brayden was three, the families arranged to meet for the first time. “As we got off the plane, Brayden ran into my arms, hugged me so tight and handed me a single white rose,” Starla says. The families have been able to get together numerous times and continue to enjoy a loving friendship. (Read Brayden's Story)
The Cassanis established the Colby Foundation in 1995 as a way to honor Colby’s memory and to inspire and educate others about organ and tissue donation.
Donor Stories
Susan's Story
On June 29, 1990 I lost my sister Bizi in a terrible accident when she was just 29 years old. It seemed so unreal; what you would see in a movie. We received a phone call in the early morning hours, rushed to board a flight to her home town and when we got to the hospital we found out that we had lost her. My family was devastated by the loss and I was simply stunned. On that day I lost the sister who was closest to me in age and who represented many of my memories of childhood.
We were approached in the hospital by a doctor who asked us if we would be willing to donate Bizi’s organs. Although our immediate reaction was yes, we wanted to see if she had put anything in place for this issue. Her fiancé went home and found her drivers license. We noticed on there that she had not listed herself as a donor and so we were left with that decision. Ultimately we agreed that Bizi would have wanted to be part of “giving life” to those in need.
We were able to donate Bizi’s heart, lungs, kidneys, liver, and corneas; although we made the decision that we only wanted to donate to save someone else, not for research purposes. Since then we have received letters through the donor association from the heart recipient and have learned that because of Bizi’s gift she was able to see her grandchildren be born. We take great solace in knowing she is doing well.
Bizi’s death and donating her organs was a valuable lesson to me and it definitely increased my awareness regarding what I can do for organ and tissue donation. Each time I renew my license, I always make sure that the Organ Donation box is checked on my driver’s license.
I miss Bizi everyday and it is good to know that people continue to live on through the gift of life she gave.
Carrie’s Story
My husband lived his life trying to be of service to others--giving his time and what he had to others in need. At some point, he told me that he had decided it was important to him to be an organ donor. We agreed it was a giving and loving thing to do. Unfortunately, his health declined over many years before he died. His lungs and his heart were in particularly bad shape. When he did die, we were convinced his poor health meant no one could benefit from his organs. Our daughter, who is a nurse, knew that tissues can often be donated even when the donor is ill or elderly like my husband. A quick call to the local eye bank confirmed that we could donate his corneas and someone else’s life would be better for it. My husband’s service to others continued even in his death—what a comforting thing for us, his family, that he was still the man we knew in this last act of giving.
Trey's Story
IN HER OWN WORDS - LAURA’S STORY OF HER BROTHER TREY
"My younger brother and only sibling, Trey, was in a serious car accident and after several days in the hospital he died from his injuries. It was Thanksgiving Day 2007.
I believe the timing of his death was significant. It forced us to approach even our darkest day with a spirit of gratitude. Trey and I both worked for U.S. Senator Lamar Alexander, and you can’t be around Sen. Alexander for very long without hearing him quote his friend Alex Haley who said, “Find the good and praise it.”For me, part of “the good” came when we learned that Trey would die the same way he lived, by loving and giving. Trey tried to live his life according to our Lord’s commandment to love our neighbors as ourselves, and as a natural extension of his generous spirit he had chosen to be an organ and tissue donor.
Because of his loving choice five people were given new life: two single mothers in their 40s, a 56-year-old mother of two who had been married for 28 years, a 36-year-old gentleman who enjoyed fishing (one of Trey’s favorite pastimes), and a 62-year-old physician and father of four who had been on the transplant list for two years.
Trey renewed his driver’s license on May 14, 2007, and marked “yes” to organ and tissue donation. His girlfriend also remembers Trey saying, “I’ll be with the Big Guy. Give it all,” indicating his wish to donate everything.
Many people find talk of organ donation uncomfortable and perhaps morbid, and others believe organ donation is a good thing but put off doing something about it for another day. A survey conducted by the National Coalition on Donation found that 91 percent of respondents support donation, and yet 29 percent have taken no action to indicate their wishes via their driver’s license, living will, or by telling their family. That was me. I’m embarrassed to say I signed my driver’s license the day Trey died. I’m thankful that my responsible brother was not part of that 29 percent like I was.
Because of his decision to be an organ donor, Trey’s story became a resurrection story. Out of death and despair came new life, and our Thanksgiving became an Easter. Through our tears we rejoiced knowing five families had gotten a call on Thanksgiving Day with news that their loved one would be receiving a life-giving organ.
But the story does not end there. On my mother’s birthday last March, 250 miles from the site of Trey’s hospitalization, she and my stepfather had the opportunity to meet the 62-year-old physician and keeper of one of Trey’s kidneys. The gift – the good – had come full circle."
Patti and Chet's Story, a Donor and a Recipient
Patti was the youngest of six children and loved the outdoors. In 1994 while on a camping trip, she called her dad Chet to tell him what a great time she was having. “I remember telling her to be safe and enjoy herself. It was the last time we talked.”
Tragedy struck in the wee hours of the morning when Patti was involved in a car accident and near death. “There are no words to describe the feelings you go through at that moment,” said Chet. However, he began to recall a conversation with Patti four years earlier, letting him know that she had signed up to be an organ donor. Chet brought the conversation up to his wife and within minutes they were on the phone with the hospital. “I told them, ‘do everything possible to save this child, but if Patti dies, it was her wish to be an organ and tissue donor.’”
Patti’s brothers were the first ones to be able to book flights and be with her in Tennessee. “I was not sure I was well enough to travel and we desperately wanted some family there with her. I had congestive heart failure and did not have much stamina,” said Chet. Patti’s brothers called and said that she had been declared brain dead. “We immediately made preparations to fly there, as we had decided to disconnect ventilated support and needed to be there with her.”
“Soon after arriving, we met with Suzy, from the Organ Procurement Organization, who went over various options with us in terms of Patti’s wishes for organ and tissue donation. The laws are different now, but I had to sign giving my consent and it was the hardest signature I have ever had to write.”
By this time, family members had begun to make arrangements to go home and plan Patti’s funeral. Chet went to lie down. “I was not feeling well and was “heavy” with the decisions that had to be made. At that point, Suzy came running up to me with some news that would dramatically change my life. I had been involved in an investigational drug study and had been on the heart transplant list for four years. I had given up hope of a heart transplant, but was involved in the study in the hope that it would help someone else. Suzy was now telling me that I could have Patti’s heart.”
Suzy informed the family that Patti’s heart could go to her father under the Directed Anatomical Gift Act. “This was a total shock and not anything we had considered, so we initially declined the heart” said Chet. “I was worried that people would think I was being selfish,” but they decided to run it by the rest of the family. They discussed the pros and cons and opted to accept Patti’s heart.
After a flight back to his home state, Chet was scheduled for transplant surgery immediately. “My chest was opened, the transplant began, and at 9:47 a.m. Patti’s heart took its first beat in my chest.” Chet’s recovery was swift - the blueness left his lips and his skin color was good. He immediately felt that he was able to think more clearly.
“I am going on 15 years now and it is like I have a new engine! Beyond a couple of colds, I have been healthy. Prior to my transplant, I had four grandchildren that I could not keep up with. Now I have 12 grandchildren and I can actually pick them up. My biggest satisfaction is my grandchildren because I would have missed knowing many of them if it were not for Patti. The change in how I felt prior to the transplant with how I feel now is truly a miracle this side of heaven.”
Jake's Story
Jake was born on May 25th, 2007. Aside from being smallish (a 6 pound, 2 ounce peanut), he was a perfectly healthy little boy, and a welcome addition to Holly and Andy’s family. Their oldest son, Ben, was 21 months old when Jake was born, and he was thrilled to be a big brother. Ben spent a lot of time comparing his feet to his brother's and acting silly to try to make him smile. Jake developed some acid reflux that kept him from sleeping well, so he spent much of his short life in his mother’s arms or asleep on her chest. “Looking back on it, I treasure all of the time I spent cuddled up with him” says Holly.
When Jake was about two and a half months old, he was put in his bassinet for a nap and when his father returned he was not breathing. Andy administered CPR, he called 911 and the ambulance crew arrived very quickly. “They were able to revive Jake's heartbeat and he was transported to our local hospital, where they did a CAT scan and put him on a ventilator. Jake was then flown to a larger hospital two hours away from home -- the longest drive of our lives. When we arrived, the doctors sat down with us to explain what they saw in the CAT scan, which was not positive. In the morning a second scan was performed, and it revealed that Jake was legally brain dead, with no chance of recovery,” shared Holly.
“Ultimately, it was Andy and I that first broached the subject about organ and tissue donation. There was no way to make sense of what had happened to Jake, to us,” explained Holly, “but there was a way to allow something positive to come of the whole experience. If another family, another mother and father could experience the joy of knowing their baby was going to survive, that would ease the loss in our lives.”
Holly and Andy talked extensively with the coordinator about their decision and gave their permission for Jake to be an organ donor. Jake was able to donate his heart and his corneas. “The coordinator who worked with us was extremely helpful, and supported us the whole way”, says Holly. “We don't know anything about his cornea recipients, but a little boy, Beckham, will be three this coming August because he received Jake's heart. The moment Jake's heart was placed in Beckham's chest, it began to beat, and on our lowest days, that's what gets us through -- knowing that Jake's heart gave this beautiful gift to a boy and his family.”
According to Holly, Jake's loss has taught so many people how important it is to treasure every moment. A local teacher was so inspired by Holly and Andy’s story that she shares it with her students to help people realize the difference organ donation can make!
Holly and Andy continue to be involved in promoting and telling their “story of hope” to others. Recently, Holly performed and shared her family’s story at the National Transplant Games to held in Wisconsin on July 30 through August 4, 2010. And Jake's image and story were part of the 2011 Rose Parade Donate Life Float floragraphs!
Judy's Story
Judy’s caring spirit, amazing smile and resounding laugh drew people to her. She was always there to lend a helping hand, provide an ear to listen and to give a smile that would brighten a cloudy day. Her career had always matched her personality. She chose to work with children first in a childcare setting and later, after completing a Masters program, she worked in a classroom environment. While focusing on her students’ strengths, she enjoyed actively engaging her students in the learning process.
So it was alarming when she became easily exhausted at the smallest activity. When she went to her doctor, her diagnosis of pancreatic cancer was shocking for her family. Judy had always been so vibrant and full of life, and it was shocking to see her go downhill so fast.
The time from her diagnosis to her death was extremely difficult and fast, just giving her family a few weeks to process what was happening. Judy’s niece Sharon, said, “I didn’t ask or bring up organ donation even though I am a huge proponent. Between dealing with her diagnosis, the fast progression (from diagnosis to death) and family members who were in varying different stages of the grief process - I just did not know how to approach the topic. I also wasn’t sure she could be a donor with her diagnosis of cancer.” Luckily Sharon did not have bring the question up, because Judy had already taken care of it. “I was shocked and thrilled at the same time to find out that Judy not only signed the donor form upon admittance to the hospital, but also that they could actually fulfill her wishes and give the gift of sight to another” says Sharon. She could safely donate her corneas.
Knowing that Judy had become a donor gave her family a bit of relief from the pain of losing her. After Judy’s death they were able to use Judy’s corneas to give the gift of sight to another. “I know her husband Aaron finds solace in the fact Judy was able to help another,” says Sharon, “ and I know it helps Judy’s mom Irene know that her final gift gave hope to someone else. Compassion was at the core of Judy’s being, so it seems right that it would also be her final act.”
We thank Judy’s family for sharing her story of hope. As we head into the Thanksgiving holiday, we honor Judy and all those who have given this most precious gift to others. You are our heroes and we stand in gratitude.
Recipient Stories
Brayden’s Story/Colby’s Heart Recipient
Brayden was born in 1993 and although he was blind in one eye he seemed otherwise healthy. However after a couple of months, his parents realized that he was not gaining weight. It was then determined that he had Congenital Heart Disease and had two holes in his heart that would require surgery. The surgery was performed, but did not help. Five months after Brayden was born, his parents were told that his main chance for survival would be a heart transplant.
His father, Joe, recalls that the doctors forewarned them that there was a big chance that Brayden would not survive the wait for the heart, which could be anywhere from 3 to 5 months. However, five weeks later the wait was over and Brayden received his new heart. Laura, Brayden’s mother, recalls that she could not believe the immediate change in Brayden, “it was beautiful to see how red his lips and finger tips were after the transplant, all because of one family’s choice to make the unselfish decision to donate their son’s organs.”
"The Cassanis first came into our lives on June 8, 1993 and because of that our son is now a healthy and happy teenager who has had wonderful success with his heart."
Macie's Story
Macie, an exhuberant and inquisitive child of two years of age, keeps her parents, grandparents and even great-grandparents busy. However, the family doesn’t mind, because at four months old Macie was just struggling to stay alive. After what seemed a normal pregnancy, Macie was born prematurely and with a severe case of cardiomyopathy (an inflammation of the heart that interferes with its ability to pump blood). Although she was allowed to go home after her birth, she continued to have significant medical problems and went into cardiac arrest twice. It was just after her second cardiac arrest that Macie, while in the ICU, had a donor heart become available.
Macie received a heart transplant at just four months old and came through the operation well enough to return home quickly. The family saw an immediate change in Macie, both in her eating abilities and her new energy. Although she will always take anti-rejection medications, she will be able to do all the things other children do, including sports. “Macie is catching up from all the time she was in the hospital and is developing very well” says her mom, Michelle. “I can’t stress enough the importance of organ and tissue donation. I’d ask people to give organ donation a chance. It saved Macie’s life.”
And Macie's mom, Michelle, continues to do all that she can to raise awareness!
A Macie update in our newsletter!
Jeffie's Story
After their beloved son Colby died, the Cassanis' decision to donate his organs saved the lives of three others. The Cassanis' story is one of hope experienced through donation. Others have experienced the life-saving gift of hope through receiving a donated organ. We are pleased to introduce you to Jeffie.
It is a beautiful autumn day, the kind that Jeffie enjoys most; where she can go out and see the changing leaves and the bright colors of fall. The fall of 1999 was not looking quite so bright due to the fact that Jeffie was in full kidney failure and spending much of her time connected to a kidney dialysis machine or trying to recover her strength just to do some day-to-day chores. However, her life changed drastically when she received a kidney transplant in May of 2000. “I have been doing really well ever since the transplant,” says Jeffie. “I wrote a letter of appreciation to the family, but I have never heard anything back from them. The donor was a four year old, so I am sure that the pain of their loss was terrible!”
Jeffie, now a vibrant 62 year old woman, enjoys writing poetry, taking long walks and looking at the leaves and the flowers. None of these things was possible when she was in kidney failure. She states that she has to take three anti-rejection medications but she does that gladly due to the sacrifice that the donor family made for her. “We just had a new grandchild born, and I would not have been around to see him enter this world if it were not for the donor family.” Jeffie’s daughter, Shermoin, is grateful for the donor family as well. “My daughter will graduate from high school this year and my mother is here to watch her walk across the stage. We are grateful to have her here and we appreciate the gift of life that the donor family was able to give to us.”
Gina' Story
“Cornea transplantation made it possible for me to reclaim my independence; I could drive and read again, I no longer struggled with depth perception issues as I had before and I did not have to sit at home at night anymore” says Gina.
In the late 1970s, Gina found it difficult to do her job due to significant vision impairments. "I had had problems with vision all my life, but I had completed my degree and had joined the Merchant Marines. I was working, but in order to advance in marine engineering, I had to meet specific physical requirements. At that time, radial keratotomy surgery was done with a knife because laser surgery had not yet started." Gina underwent radial keratotomy twice in each eye in an effort to correct her vision and to meet the physical requirements for licensing in the Merchant Marines. Even after going through surgery, her vision remained poor enough that she had to leave the ship.
Gina continued to have problems and developed further issues that complicated her vision. Her vision would change dramatically throughout the day. Her depth perception was seriously altered and she did not have good definition to her sight. “I could see the trees but not the birds in the trees,” said Gina. “it is exhausting to see images the way I was seeing them, I would see multiple images of a single item I was looking at.” She further commented that due to the surgeries she had already had, her vision could not be corrected and she had significant issues with the amount of scar tissue that had built up from the surgeries.
“I was frustrated with all of my vision issues and the limitations that it presented,” says Gina. However, she was excited to hear from a friend of hers about a cornea transplant he had received. Gina went to see a specialist and it was decided that she was a good candidate and would go forward with a cornea transplant in her right eye.
“The transplant was 15 years ago and I don’t even think about sight limitation anymore. I do what I want and I am not limited by my vision. I have to wear glasses, but that is nothing compared to what it was before. I can read, recognize people from a distance, drive, and my depth perception is so much better. The things that use[d] to limit me are no longer an issue” Gina reported. “If I had not had a cornea transplant, I don’t know what I would have done. Vision is involved in every moment of your day and I could not be working in the fields that I have chosen without the transplant!
Steve’s Story:
My name is Steve and I've lived for 50 years with cystic fibrosis. Cystic fibrosis patients usually develop very thick mucus in our lungs, harboring infections which create scar tissue. This tissue gradually builds up to a point that our lungs cease to function properly.
When I was listed for transplant in September 1997, my lung capacity was about 10% of a normal person's. I was on oxygen around the clock. I was on countless medications and required chest physical therapy. For four treatments totaling eight hours every single day for three years, someone was pounding on my chest, and pounding hard enough that we broke ribs 6 times in those three years. I waited on the list for almost three years. I had four false alarms before that call on April 8th.
My first dinner at home after my transplant, I sat at the table with my family. After dinner, and for little apparent reason, I started to cry. It had just dawned on me that we didn't have to get up and go pound on my chest.
Nowadays, I open my eyes in the morning, stretch and take a breath. I no longer hear my chest gurgling! It's been just over ten years, and I still walk around in complete awe of how this feels! After three years off, I was back at work 10 weeks after my surgery. There is a double flight of stairs from the trading floor to my offices that I hadn't climbed in 10 years. I didn't even go DOWN them in the last five years. Now, every chance I get, I bound up those stairs two steps at a time. And every time I get to the top I smile, because I know who got me there, my lung donor Kari.
I've been in contact with Kari's family and friends for almost eight years. Hearing stories about Kari and seeing so many pictures has brought her so much closer to my heart.
Kari was a leader on her high-school volleyball team. When Kari passed, her school retired her number, 13. The following year, which would have been Kari's senior year, her team dedicated their season to her. Her teammates created a beautiful t-shirt in her honor. They gave Kari's family a few of the shirts they created. On Kari's 19th birthday, her Mom sent me one of the shirts which I wear with pride at athletic events.
Kari and her family are my heroes - Kari saved my life!
For more information on Steve, you can visit his blog
Beckam's Story
When Beckham was born his family thought he was a healthy, beautiful, 8 lb 11oz bundle of joy. However, that ideal picture was shattered when he was diagnosed with Mitral and Tricuspid Valve Stenosis. He was quickly transferred to another hospital that could more readily assist newborns with such a grim diagnosis.
Immediately, the hospital performed a procedure to ease the pressure in his left atrium, but during the process they found further issues with Beckham’s heart. At 5 days old, Beckham was again transferred to another hospital, this time by life flight due to the fact that he needed a higher level of care. It was clear upon arrival that Beckham was in trouble and in need of some type of an interventional procedure to improve the function of his failing heart. Surgery to repair his malformed valve was deemed too risky given all of the presenting circumstances, and Beckham’s team of doctors informed us that the only option to save his life was a heart transplant. So, at the tender age of 6 days of life, Beckham was listed on the National Donor List for a heart transplant.
Ten days later, Jake’s family (Jake's story is featured here) made the selfless decision to donate their precious son’s heart. The preparation and surgery lasted about 6 hours, and the surgery and the early post-transplant period went flawlessly. “Our once “blue” baby came back to us for the first time “pink,” and perfect,” said his mom, Kim. “Beckham’s recovery was miraculous. He was their first transplant baby that was able to nurse post-transplant, and to come home completely tubeless. He was released from the hospital when he was not even 6 weeks old, just 3 weeks post-transplant.
”Beckham is now three years old and has had some setbacks both large and small. Some of them include a stroke in 2008, caused from a blood clot and bleed in his brain (cause of the clot and bleed is unknown), and three different and serious blood disorders (Idiopathic Thrombocytopenic Purpura (ITP), Hemolytic Anemia (AIHA), Glanzmann's Thrombasthenia), resulting in the diagnosis of Evan’s Syndrome (a very rare, serious, and reoccurring blood disorder). Through all of Beckham’s illnesses and hospitalizations, he has remained happy and determined, letting nothing bring him down. He is full of energy, thriving, and getting into trouble just like a normal 3 year old would. We agree that much of this is because of his determined, delightful, and active personality, but we know down deep inside, it is mainly because of Jake’s angel heart that beats and lives inside him, reminding us all of the precious gift that we’ve been given."
Click this link if you missed Jake's story of hope
Manu's Story
Manu is currently a first-year medical student and his excitement about medicine stems from the kidney transplant he received when he was 18 years old.
Manu grew up in Pittsburgh and was plagued with a childhood illness that ultimately resulted in end-stage renal disease. He had been in and out of the hospital due to infections and surgeries and made many friends with other patients and staff alike. Having formed these relationships, he was very aware of organ transplantation but did not know that it would ultimately affect him a very personal way.
Manu was lucky because there was a living donor, his father, who was able to donate a kidney when Manu had become so sick. Manu received his kidney transplant at a time when he was at new beginnings; he was just completing high school, heading to college and establishing his independence. Receiving his kidney at the same time as all the other new transitions was another new beginning. However, he also states that he felt a new sense of maturity and responsibility. “My transplant happened on the cusp of adulthood, and greatly influenced my plans and outlook on the future,” said Manu.
Manu has done exceptionally well with his kidney transplant and states that he understands how lucky he was to have such a great medical team working with him and his family. With his health status in good shape, he was able to concentrate on other areas of his life but always with a clear understanding about what he had just been through with his transplant.
Inquisitive by nature, Manu soon found himself with a strong curiosity about medicine and an even stronger desire to help others. This desire has led him to the field of medicine where he hopes to be able to continue to feed both his curiosity and his desire to give back to his community.
Nate's Story
“I was a healthy person all my life. I have been a runner for a long time and have had no problems with my heart.” This was the opening statement of our interview with Nate, a 31 year old who just celebrated his 2nd “heart” birthday.
“It was on my daughter Mikaela’s first birthday when the problems started. I did not feel well and was sure that I had the flu. I just did not get any better,” says Nate. In fact, Nate started to go “downhill”. The doctor diagnosed him with endocarditis. According to Nate, “I had a staph infection in my heart and the infection had created a hole in my aortic valve.”
The doctors decided it was best to try to do a valve replacement on Nate and ended up doing not one but two of them. Neither of the valve replacements worked. The bacteria continued to wreak havoc, tearing a hole in his heart and basically ripping the muscle apart. Nate was flown immediately to another hospital and placed in the Cardiac Intensive Care Unit. “At this point my wife and I had learned that I needed a heart transplant and that my situation was pretty dire” says Nate, “I did not learn until later that the doctors were not sure if I would live week to week in my wait for a heart donation.”
"Although both my wife and I were stunned at what was happening, she was a trouper. My wife Genevieve really stepped up. She did not let the shock do anything to her. She held our family together and continued to work remotely from the hospital. She slept right there at the hospital every day.” Nate was relatively lucky. He was only on the transplant list for 60 days, which is a fairly short period of time.
On July 4, 2009 Nate was notified that they had a donor and on July 5th he woke up with a new heart! Celebrating “Independence day” has a whole new meaning for Nate and his family.
Nate has had no problems with his new heart and there have been no rejection issues! He recently was part of a relay team and ran a half-marathon. Nate is so grateful for this gift of life. “Not only was my life saved, but Mikaela still has her Dad and we also have a seven month-old daughter Sienna. She would not be here if I had not gotten this transplant.”
Nate continued, “we have not had an opportunity to meet our donor family but we have exchanged letters with them. I am so thankful not only to the donor family but to our doctors. We named Sienna after one of our doctors. Her middle name is in honor of him! Obviously organ donation has had a huge impact on my life and many of my friends have seen what it’s done for me. A number of my friends have signed up to be organ donors just based on my experience!”
Stories of Waiting
Josie's Story
I am a forty nine year old woman who had always been healthy as a horse. In fact, riding horses was something I loved to do. That was before I found out I had cardiomyopathy and heart failure. Somehow an infection that I never knew I had damaged my heart muscle. Unfortunately, by the time I had any symptoms, the damage was so bad that my heart was in heart failure. The doctors told me they could manage my heart failure with medication for a while but that I would need a heart transplant to save my life. That was nineteen months ago. I am not improving and hope that a heart is available soon. My daughter is expecting our first grandson and my greatest hope is to be around for all the miracles of his little life.
Ralph's Story
The Yankee win of the World Series was a sweet victory for Ralph and whether you are a fan of them or not you cannot begrudge him for a moment. Ralph has been a devoted fan. After retiring 4 years ago, this hard-working New Yorker was ready to focus on the “fun stuff”, like spending time with his wife, Cathy; seeing more Yankee games and spoiling his two grandsons. However, time came to have a whole different meaning when Ralph learned that he had leukemia. Ralph received chemotherapy, and did go into remission, but unfortunately it was short-lived. He has completed a T-cell infusion and more chemotherapy, but little ground has been gained.
With his options narrowing, his doctors searched the Be The Match Registry for a suitable marrow or cord blood match, but none was found. Four months later a match still has not been identified for Ralph. “I have lived a good life and I don’t have any complaints; but I am not ready to leave my family yet,” says Ralph.
Thousands of patients, like Ralph, need an unrelated bone marrow transplant. While many patients find a match and receive the treatment they need, there is a huge need for more people to join the Be The Match Registry.
Human leukocyte antigen (HLA) typing is used to match patients and donors for marrow or cord blood transplants. Because tissue types are inherited, patients are most likely to match the tissue type of someone who shares their racial or ethnic heritage.
Becoming a potential marrow donor can seem daunting, but it is easier than you can imagine. You can join the Be The Match Registry by taking just a few simple steps, if you are between the ages of 18 and 60 years old and meet the health guidelines. Remember that when you sign up for the Be The Match Registry, you are making a statement that you are willing to help any patient in need. After some information gathering, all you do is give a swab of cheek cells to be tissue-typed. This is what will be used to match you to patients in need.
That is all that’s needed to take the first step to help someone who is waiting for this life-saving treatment. It is a marrow donation opportunity where both the donor and the recipient are living…it is a gift of life and for people like Ralph…a gift of time!
Update - It is with sadness that we share...Ralph lost his battle with leukemia. Although he never found a bone marrow donor match, he never gave up hope. In memory of Ralph we wanted to remind you that you can sign up to be a bone marrow donor through the “Be The Match Registry” if you are 18 to 60 years old and meet the health guidelines.
