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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.
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.”
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!
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.”
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!
Click here to join the Be The Match registry
