Monday, July 22, 2013

Dear You, Who Received My Son's Kidneys...

Dear You,

There are pamphlets and tips for writing a letter like this.  A procedure to follow that asks that you leave out any information that would identify yourself or the organ donor in the hopes of ensuring privacy for all involved.  I have tried to write that kind of letter - the proper one, I suppose - many times.  I just can't do it.  So I am resorting to my own method - my online journal where I can write what I need to write. Because you must know - this letter is what I need.  It's what I need you to know.  It's what I need to write as part of my healing.  It's what I need the world to see about the beauty that organ donation brings to a tragic and devastating situation.

Dear You, I want you to know that my hope and prayer is that this reaches you... the one that received my son's kidneys on or about April 15th from a hospital in Delaware.  We were only told that you were a man in his 40s who lives "out West."  West Coast?  MidWest?  We don't know.

I also want you to know that I am not looking to invade your privacy in any way.  I'm not looking to post information about you on my blog.  Although my heart's desire is to just know - somehow, someway - that this reaches you... the real you... I don't want you to feel pressure to reach out to me.  I am comfortable with anything YOU are comfortable with.

I really hope that your transplant went well, that you had a textbook recovery and that you're enjoying life in a way that you couldn't before.  And I very much hope that these new kidneys ensure that you live many more happy and healthy years.

I can't imagine what it must feel like to be the recipient of an organ from a donor that has died.  Especially if you know that your donor was a child.  In this case, he was.  His name was Gavin David Leong and he was 5 1/2 years old.  I tell you this not to make you feel bad - or to make our story more dramatic.  I tell you this because our little boy had the body of a 5 1/2 year old - and healthy kidneys - but his soul?  His soul was old... and wise.
Gavin had an undiagnosed genetic syndrome that made him a little bit different.  He was born with very low tone which made physical things like sitting up, crawling, feeding himself and walking difficult.  He also was non-verbal and had developmental delays.  We were told he had Cerebral Palsy, but I truly never believed that.  Slowly... and in his own time... Gavin defied every prediction put upon him.  He hit his own milestones and we were so, so proud of him.  Just before last Christmas, 2012, he took his first steps at 5 years old.  It was one of the happiest days of my life.

Gavin had his physical and developmental issues, but he really was the healthiest person in our house!!  He had an amazing diet of homemade pureed food that I made and we took very good care of him.  I'm so glad that his kidneys were healthy enough for you.  His good health makes his sudden death that much more shocking for me.

On April 10th, I noticed he was getting warm and then he started to get lethargic.  We happened to be right across the street from the emergency room so I brought him right there. I knew I was overreacting, but I brought him anyway figuring they could at least give him comfort measures for his fever. Looking back, my actions were completely guided that day. It was in the emergency room that Gavin had a febrile seizure. That seizure triggered cardiac arrest.  After six minutes of CPR, they were able to start his heart again and stabilize him enough to be brought by helicopter to Nemours A.I. DuPont Children's Hospital in Wilmington, Delaware.  I was so grateful as this was "his" hospital where he saw many doctors and had several different "minor" surgeries.  He was well known there and I knew we'd be well cared for.

It didn't take long for us to realize that Gavin was not going to make it.  Sir, I want you to know that one of the early conversations my husband and I had was about organ donation.  It was an easy decision for us and I'll tell you why. Our little boy, our first born, never uttered a word.  But throughout his short life, he managed to inspire people... heal people's hearts... change people... and help people.  And he started with us, his parents.  In our hearts we knew - if we kept him from continuing to help and to heal, we would not be honoring his life at all.  It became obvious to us that helping and healing had been his mission - his life's purpose. How could we not let that continue in his death?

Four days after his emergency room visit... on my birthday, April 14th... Gavin was pronounced brain dead.  That same morning, I woke up next to him in bed with an overwhelming feeling that I was pregnant.  At 43... after years of infertility and many pregnancy losses, this seemed ridiculous.  We had given up - and given all of our baby things away.  Sure enough, that overwhelming feeling turned out to be true. Gavin's little sister, Hope Margaret, will arrive in time for Christmas. Gavin's 4 1/2 year old brother, Brian, can't wait to be a big brother.  In my heart, I feel Gavin is sending Hope to us from Heaven.  

We stayed overnight with Gavin until they brought him to the operating room for the organ harvest on April 15th.  I need you to know that it truly was a privilege for us to wait.  We were grateful for the extra time with his sweet body... but we also wanted to escort Gavin as far as they would let us before surgery.  We posted a big sign at the foot of his bed that said "Superhero Gavin - Off To Save Lives!"  
As he was wheeled towards the O.R., with my husband and I proudly walking behind, the halls were lined with doctors and nurses and other hospital personnel.  They were all clapping.  Clapping for our son.  They knew what we knew - that he died a hero.

Dear you, I need you to know that donating our little boy's organs brought us much comfort during the darkest time in our life.  I really need you to know that.  I want you to accept his kidneys as your own with no guilt... or worries about his family.  We chose organ donation and embraced it fully because we wanted Gavin to continue to help people.  And believe me... he may have started with you, but he is helping a lot of people still.  I have been writing and talking about his organ donation since that day and am so proud that hundreds of people have written to me to tell me that they registered as donors.  And others have told me that they have had the conversation with their spouses about choosing organ donation if, God forbid, something happens to one of their children.  As you can imagine, it's a much easier conversation to have with a clear mind.

Gavin's death and his organ donation may have given you health... longer days on this Earth... or maybe it even saved your life.  I would be thrilled for any of those scenarios for you.  But you should know that his even greater gift to the world has been to inspire people who have followed his story to help others - in big and small ways.

You have very special kidneys now.  They come with superhero powers and a piece of our little boy's spirit attached to them.  We are happy to share him with you in this special way.
If you do want to contact me, you can email me through this blog.  Or you can write to me through the Gift of Life Donor Organization.  Either way, I will be able to verify that you are indeed the recipient of Gavin's kidneys through them.  If you do want to stay anonymous, they will ensure that!

Dear you, I wish you many, many years of health and happiness.  
With every good wish,

Kate, Ed and Brian Leong

(If you are reading this and feeling inspired to become an organ donor - please look into registering online in your state!  If you're in Pennsylvania, click HERE to register.  You don't have to wait to renew your license!  And please write on the wall of my Chasing Rainbows Facebook Page to let me know if you did.  Your posts may inspire others to do the same!  Let's help Superhero Gavin continue to inspire others to save lives, too!)


  1. Still a beautiful letter. We all make mistakes. Dont be too hard on yourself. I know! We'll chalk it up to pregnancy brain... lol! As always, love and light! Mary in SC

  2. Love. Thank you.

  3. Kate, I pray this reaches the man it is intended for. I can tell you, that my dear cousin's husband (so my cousin in law) was in need of a kidney transplant years ago. he was in his late 30s early 40s. They had one child at the time. The thought of him not getting his kidney in time was so crazy and nervewracking, thinking he is a husband and father of a young boy... not to mention a son, a brother, etc.

    But sure enough, he got his kidney. And has gone on to have another child, a little girl.

    this family would be broken up if not for this kidney donor and it would not exist as it is today.

    I know what a kidney donation can mean to a man in his 40s.

    I pray this finds it's way .....

    You are amazing

  4. Another beautiful letter.... I hope it finds it's way to the man who received Gavin's kidneys. He would be so touched with your kind words. Thinking of you and your family always

  5. Hi. I don't think I've commented before, but I read your blog when Gavin passed in April. I just had to comment on this. I have cystic fibrosis (CF) and have had a lifetime of health issues. Furthermore, I will someday, probably before I'm 40 (I'm 29 now), need a pair of lungs (and perhaps later on a kidney or liver). I have many friends who also have CF. I've seen many die before lungs could arrive, many die with complications after getting new lungs, and many survive and thrive with their new lungs. Organ donation has always been a very conscious part of my brain.

    I'm very sorry for the losses of Darcy and Gavin. I just wanted to say, I very much appreciate your attitude towards organ donation. I shared your post on facebook in April when Gavin died. It touched me that you took such a tragic situation and said things like donating his organs was a privilege. This letter just furthered that for me. I have shared this post as well. I am very thankful for you that donating his organs has brought some semblance of peace to you and your family in having lost your precious boy.

    I wanted to share with you what I wrote when I posted this blog tonight...
    "A few months ago, I posted a blog about a woman whose 5-year-old son Gavin died. She called donating his organs a "privilege". She has now written a blog as an open letter of sorts to whoever received his kidneys. It's beautiful. And it's such a heart-lifting representation of organ donation. Moreover, it's that lovely a message from the DONOR side rather than the recipient side (a much rarer find, given the grief attached). This couple who lost their son has gained some sense of peace and gratitude in knowing that their "superhero" son saved some lives. It's well worth the few minutes it takes to read."

    Thank you for your fantastic attitude, and I hope it continues to help you in everything.

  6. You are such a beautiful person. Thank you.

  7. I hope and pray this letter reaches your son's kidneys recipient.

  8. So strengthened by your letter. I feel so blessed - and I'm sure Gavin's kidneys recipient does, too. Thank you for sharing!

  9. Kate, This was beautiful. My sister is an organ recipient (heart) and got her new heart about 8 years ago (she is 28 now). She has gone on to become a pediactric nurse and works at Children's Hospital in St. Louis. She knows first hand what it's like to be involved in the organ donation process, as does the rest of my family. We are all fully aware that for my sister to live, someone else had to die. It's not an easy thing to wrap your mind around, but I know that my sister and the rest of my family is eternally grateful to her I'm sure Gavin's kidney recipient is to you and your family. God Bless your family and sweet Gavin. He truly is a hero. :)

  10. I'm so sorry for your loss. Your letter was beautiful. Thank you for shaing it.

    And congratulations on your new addition...your Hope.

  11. Beautiful letter I hope the recipient of Gavin's kidneys contacts you.

  12. Your blog and writing is just fantastic....thanks so much for sharing your life! Especially enjoyed this post, it is beautiful! Hopefully it will reach Gavin's kidney recipient. Best wishes to all of you, and especially thinking of Hope.

  13. Dear Madam,
    Your post was referred to me by a nurse practitioner friend. Any words of compassion must sound hollow, and none can provide solace to a mother's grieving heart. After a decade of working in prehospital medicine and witnessing the miracle of life and the closure that occurs with death, I am inspired by your letter. It has truly touched me, and I wept. Thank you for your donation of life, trying it may have been. May you find peace for you and your family, and shall it always be present. Take comfort that your decision will be truly cherished; by even those whose patients have been touched with similarly generous gifts, and by those who have supported the families making difficult choices. Thank you for sharing your heart.
    Truly yours,
    Serenity's "big paramedic"

  14. So very sorry for your loss. I cried reading your words, as a mom I know this must be so hard to write. It's important to honor Gavin's sweet, young life. Bless you for saving the lives of others through your grief. We know what it is like to wait as our daughter needs a kidney donor. Best wishes to your family!

  15. God Bless you, family and your little super hero. We need more story's like this. Very honest and raw emotion. I to need a kidney and it amazes me how when trying to talk about it and the out come, dyeing if I don't receive it. Well people just don't want to discuss it. Thanks for Sharing and being so open about it.

  16. What a beautiful letter and beautiful blog. My sympathies to you on the loss of your precious boy. May it be some comfort to know his kidneys made a huge difference for someone. As a mother with perinatal losses of a set of twins and precious little girl 30+ago, I hurt along with you. I pray for continued good health as you carry Hope to a healthy birth. My husband is in need of a kidney so we relate on that part as well.
    May God richly bless you and your beautiful family. Thank you for sharing so beautifully

  17. Kate -- First, let me say I am so sorry for the loss of Gavin, the Superhero! And, secondly, let me say "THANK YOU" for choosing organ donation. My husband was saved three years ago by a kidney transplant from a 21-year-old young man who took his own life and whose father decided to donate his son's organs. My husband wrote a letter thanking the father, and the father wrote back, starting with "To the man who now has my son's kidney...." It was a beautiful, touching letter just as yours was. Unfortunately, the father was killed in a car accident shortly after that, and we never got to meet him and hug him and and tell him "Thank you" in person. But, the father knew that his son's kidney changed, improved, and extended another life -- just as you know that Gavin's gifts have done the same for other people. If you never hear from Gavin's recipients, I hope you will always know in your heart that you did the right thing ... most especially, the right thing for Gavin. God Bless You Always!

  18. Of course Gavin was a hero - he came by it honestly. :) My husband and I have already had the discussion about organ donation (for everyone in our family) but thankfully I've never been in the situation where I've had to do it. God bless you and your family.

  19. Your letter was absolutely beautiful. As I sat here and teared up through reading most of it, it was one of the most inspiring composition of words I have ever read. I am so sorry for the loss of your son, as a mother I cannot even begin to imagine the incredible pain that you were faced with. I pray that you, and your family, find peace and comfort knowing that his organs were able to help save the lives of others. That knowing that a small part of him will live on because of your courageous decision to give others the gift of life, even in the heart of losing the life of someone so precious to you. Your strength is amazing. I have never had a close encounter with organ donation, but it has always been something so near to my heart, for a reason I can't even explain in words. It was a "requirement" of my husband for us to be together, and we have had the conversation many times, even with our children (in an age appropriate fashion). It was wonderful to see the feelings from the side of a donor as opposed to the recipient, as its a side we see much less often. I pray that your pregnancy with baby Hope is a wonderful one for you, and that the delivery is smooth and joyous, after all she was meant to be.

  20. beautiful, beautiful, beautiful. thank you for such a powerful expression of raw honesty. you will be happy to see what us canadian girls are doing up in canada for organ donation - we've posted this on our facebook page as well. much love, xo.

    jess & shelley

  21. Ive tried to comment twice earlier, but here I go again. Your letter is beautiful. I am both a recipient, and part of a two time donor family. I have a published book of inspirational poetry, and would love to send you some. I have several that are printable and all have been very well received in the transplant community. I have many that deal with the loss of a loved one, and donor's in specific. Please if you get the chance, email me at and I will send poems!

    Joe Kralicek
    Mayo Clinic Liver Transplant #397
    November 1, 1992

  22. Kate, thank you for posting the story of your beautiful son, Gavin. Your letter is full of warmth and very inspiring. Thank you again.

    From Tokyo, Japan

  23. Our twenty-three year old son died March 18,2013 from Traumatic Brain Injury. He had been in the Army for five years and was just days from transitioning out and coming home. Unbeknownst to us, he too was an organ donor and was able to donate his liver, kidneys and heart.

  24. Kate, thank you so much for your beautiful words about a short life well lived. Not only were you blessed to have Gavin, he was blessed to have you, his daddy and his brother too. My younger brother, who is now 52, was given the gift of life through a heart transplant 2 years ago after 7 years of increasing deterioration. I know he is so thankful and also full of survivor's guilt, that he got to live his life while someone else died. It is so comforting to me to know that there are donor families that are grateful to give the gift of life to someone else. I'll hold that possibility open for my brother.

    Blessed be,
    Julie Rogers, Tallahassee, FL

  25. Kate,

    I hardly know where to begin. Thank you for sharing your family's story. Thank you for allowing Gavin to be a superhero. I'm a kidney recipient. I had my transplant on Oct. 18, 1992. After my surgery I started many times to write a letter to my donor's family, but I had no words with which to thank them. It was simply too big a task, too hard to say what I was feeling. So, I never finished that letter, and now, 20 years later I wouldn't want to intrude on their lives. But I feel as if I can in some small way right that mistake by saying to you what I should have said to them....

    Thank you. Thank you for making what must have been, no matter how certain you were it was right, a terribly difficult decision. Thank you for giving me my life back. I was 25 years old, I had been ill my entire life and had been on dialysis for 2 years. My transplant allowed me 7 years of a normal life. And, even after I rejected the kidney, it gave me hope that I can eventually have another transplant when I'm ready. Please know that your gift allowed me to experience the joys and sorrows we all face: seeing my sisters get married, getting married myself, and even losing my spouse. I was dying on dialysis, and I never expected I could experience any of those things. As odd as it may sound, I wouldn't trade any of them, good and bad alike. The gift donor families make is so much more than "just" an organ, it's a lifetime, not just for the recipient but for their family and friends as well. From the bottom of my heart, thank you.

    Peace be with you,
    David Borad
    Sacramento, CA

  26. As a person who struggles to breathe every day and not knowing whether this person will ever get a lung transplant or even be placed on the "waiting list" a story like yours gives hope.
    I am that person who struggles to breathe, I am that person who does not know when or even if I will be placed on the "waiting list". I am also that person who cried when reading this powerful story about your precious son while thinking the whole time...Gavin is really Superman. Gavin will always be Superman.
    I am also that person who now believes in Hope, Faith and Love.
    Thank you for sharing your story with the whole world, Thank you for giving me back my faith, hope, and for loving your son enough to donate his organs. God has a very special angel in heaven and his name is GAVIN.
    Thank you Gavin's family

    May God continue to bless you and your family.
    Tanya Ewig
    Milwaukee, Wisconsin

  27. Dear Kate,

    Your letter is very moving and personal, and shows how very fortunate your son Gavin was to have been born into a family which cherished him during all of his too-short time on Earth, and who will remember and love him always.

    After suffering from congestive heart failure, caused by chemotherapy, for 13 years, I received a new heart in October 2009. I am grateful every day for this magnificent gift; it changed my life. I can breathe deeply again, I can walk without having to rest every 20 feet, and I can go to sleep at night without being afraid that I will never wake up again.

    I wrote to my donor's family but never heard back. I respect their feelings, and understand that the pain of losing their loved one may be too great for them to revisit. I only hope that my letter conveyed to them even the slightest amount of the tremendous gratitude I feel for the unselfish, generous decision they made at a devastating moment in their lives. I hope they understand that they gave me back my life, and gave my husband back his wife.

    I was a registered organ donor for many years before I had cancer or congestive heart failure, never dreaming that one day I would be an organ recipient. It is an amazing thing to be able to save someone's life.

    I am sure that Hope Margaret brought with her a bit of Gavin's soul home to you. What a magnificent miracle, and what a deserving family. God bless you all.

  28. My family was touched by two organ donors. My sister received two livers. The first was from an eleven year old boy. For whatever reason this liver failed after a few weeks. So she received another from a young woman. This liver transplant enabled us to have her for 12 more years. These were not years without a lot of hospital admissions but never less we were granted more years with her. The second one developed the same disease she originally had, primary biliary cirrous (sp). The doctors said she could have another transplant but due to many factors she would never have any quality of life so she declined. She lived long enough to see her son marry and help with his wedding. We are forever thankful to these two families who made that decision to donate. We even received a picture and note from the last donors family. Amazingly she favored my sister! So if anyone is trying to make the decision whether or not to be a donor, consider that someday someone in your family might need that organ that someone couldn't make the decision to donate.

    1. My son Scott received a kidney transplant at Barnes Hospital on July 26, 2013. I wrote a letter to donors survivors. Was very happy to receive a reply that my letter had made her day and she sent two pictures of her 33 year old husband that had died & donated everything they could use. He was a window washer for skyscrapers...his name was Devin. She wrote the town they were from in the letter but the transplant ppeople mark everything out that may lead you to find them. I am about to send her a picture of Scott, the recipient. It has been 2 years & almost 6 months. Thank you Devin for the gift. If Amanda sees this I can be reached at I hope you find us

  29. Thank you so much for posting this Open Letter. I am a two time Heart Transplant Recipient - 20 years apart from each other. I wrote letters both times to my donor family. I never heard from the first family. My friends and family also wrote letters. The Second Heart transplant was only a short time ago so I still have hope of connecting with them.

    I'm a hugger and I needed to wrap my arms around a donor family. Because of this need I attended the US Transplant Games 5 times and have won a bunch of medals. A new group took over and it's called the Transplant Games of America. Donor Families, Living Donors and Recipients get together for 4 days of Celebrating Life. Living Donors and Recipients compete (not against each other) in an olympic style games - though we are far from olympic athletes. Donor Families are treated like the Heros they are! Work shops for all and there is even a Donor Recognition Ceremony! Teams from all 50 states participate. Games are held on the even years - no games this year, next year is in Houston Texas. The games are held in different places each time.

    The excellent news is that everyone there gets it! We all understand the precious gifts and recognize how special they are because of the difficult time in which the gift is given.

    I've been given 20 extra years of life that I wouldn't have had without these precious gifts. I've watch my three young girls grow into beautiful adults and got to meet my two Grandsons.

    When you are ready I encourage you to visit and check it out. Your local OPO (Organ Procurement Organization) can point you to your team.

    Once again, thank you for your letter and your gift!

  30. Your story is amazing...and your Son is a Hero. So many reply's with beautiful stories...that started from yours. God Bless you all. Thanks for sharing.

  31. Thank you for putting your amazing story out there! As a heart recipient, I know "thank you" is not enough, but THANK YOU, an God bless you an your family always!

  32. Thank you Kate for sharing Gavin's story and being so open and confident about your decision as his parents. As a 4.5 yr kidney recipient who had a mother who lived 20 additional years because of a kind and generous donor, I "thank you" for being a donor family. Gavin truly is an inspiration and as his parents, you must be so proud of the legacy he has brought to this world.

  33. Thank you for sharing your beautiful story. I breaks my heart that you lost a child but I know that he will continue to live on through his gift to others. I currently work in this small section of medical science. I help make kits that are used to type for transplants. This story touches my heart and once again reminds me of the importance of the work I do and how I can help others in a small way. Thank you for sharing.

  34. I have tears running down my face. I am the mother of an 8 year old little boy with Cystic fibrosis. He faced many struggles when he was first born, and underwent surgery to remove a blockage in his bowel at just 24 hours of age. He was dubbed, 'superman' by my husband, and we make sure he always has a superman shirt. :) I applaude you and your husband to make this courageous decision to share not only the body of your superhero but also the story of his short life. I am a nurse, and I will admit that my husband and I did not become organ donors until our son was born. Then it seemed so crazy that we never opted for it long ago. I hope you are able to connect with some of the recipients of Gavin's gifts. With Cystic Fibrosis, there is no cure. I know the choice I would make if we should ever lose our child. Thank you for your beautiful story. Big hugs coming from northwestern Pennsylvania.

    Melissa, mama of 'Adam the brave'. Conneautville PA

  35. You and your family are truly brave and remarkable!

  36. I wrote 3 such letters from the Hospital the day that my little boy donated his organs. One family didn't respond. I wrote response. I wrote a third and a fourth response.

    Finally I contacted them via a blog that they maintained. They hadn't received ANY of my letters (however I'd been told that they had). They thought their donor was a little girl, not a little boy. They were told that they'd never have contact with the donor family....that it was "better that way". We now know them and keep in touch with them and are very glad that we do.

    I hope you get to meet him someday.

  37. Wow. I really just don't have any words, lady! You are awesome! Your little guy lives on.

  38. What a awesome post! I hope your words reach the person you are searching for. I came across your blog post while searching for organ and tissue donation stories. Since it's April I decided to create a LINK UP where people can share their donate life stories. If you decide to LINK UP then that will get your post out to more people. If not, I understand. Here is the link in case you are interested


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