This is a letter, which should have been written months and months ago. However, it has truthfully taken me this long to be able to quantify what this last year has meant to us. On June 8th, 2009, our two and a half year old son received your loved one's kidney in an organ transplant and our entire family's life drastically changed in such a way that it is only now, nine months later, that I feel capable of sitting down and composing a letter that would fully express our thanks and gratitude for your generous, selfless gift.
Before our son Maximus was even born, we knew he would have health problems. Issues were identified on ultrasound and although we did not know the full extent of what we would be facing, the fact that he may require a kidney transplant at some point was posed to us even then.
He was born five weeks early and spent 17 days in the neonatal intensive care unit. He was diagnosed with chronic kidney disease somewhere between stage 4 and end-stage renal disease and we were told that he would, indeed, require a kidney transplant as soon as he was large enough. He underwent 4 surgeries his first year of life and the actual transplant was his sixth surgery. At various points in his life, he was on as many as 12 different medications delivered every couple hours, in an attempt to keep his body working with very little renal function.
Our life revolved around Max's feeding and medication schedule, around weekly doctor's visits and blood draws. We were in the hospital more times than I can count that first year of his life. It became clear in that first year, that his development in all areas of his life was being affected by his kidney disease. He could not eat enough on his own to thrive. He grew very slowly. His speech was extraordinarily slow to develop. He did not take his first steps until he was 18 months old. His fine and gross motor skills were way behind.
His doctors assured us that this would change once he was transplanted, that he would probably catch up. However, when you are in the midst of dealing with such a devastating, insidious disease, it is truly difficult to believe that will actually happen.
Throughout his first 2.5 years, Max was an insipiration to everyone he came across, to everyone who heard his story. He was a happy, loving little boy, who seemed to somehow take everything he had to deal with in stride. He did not appear sick in any way, which was a blessing, but often made it even more difficult to remember just how very sick he was.
Six months before he was transplanted, he had to go on dialysis because his kidney function could no longer keep him stable. We performed dialysis in the home. It was a long, arduous, daily process, in which Max was hooked up to the dialysis for twelve hours a day.
When the call came at 6am on June 8th, notifying us there was finally a kidney for Max, he had been on the deceased donor list for 9 months, 9 months in which we were chained to our cell phones. 9 months, in which we had to keep Max as healthy as possible so that he could actually undergo such a huge surgery. I will be honest and tell you that by that Monday, I had begun to wonder if the call was ever going to come. I know there are people who wait far longer for a kidney than Max had to, but he was so young and his critical development was falling so far behind that I felt as if a clock was ticking and I was scared that the call would come too late.
That call that morning, signaled the beginning of one of the happiest, most joyful times in our lives. There was an aura of true celebration throughout the entire two weeks Max was in the hospital. He came through the surgery with flying colors and the effects of having a healthy, functioning kidney made themselves known almost immediately. He began eating by mouth while he was still in the hospital, something he had never done before his surgery.
Within the first month, his speech began picking up dramatically. At 2.5 years old, he went into the surgery still looking like a baby. 9 months later, he has grown exponentially. He finally looks like a little boy. He attends preschool two days a week and is thriving. He is starting to speak in sentences.
He is finally a healthy little boy and he is still extraordinarily happy. The only way you would ever know the trials he has been through in looking at him, is to lift up his shirt. It is only then, when you see the scars from 7 surgeries on his little belly, that you can see what he has gone through in his young life.
Although Max will struggle his entire life with kidney disease, your donation has made it possible for him to experience early childhood as an almost normal, little boy. I say 'almost normal' because he still takes daily medication and he is watched very closely. He still undergoes a great number of blood draws and doctor visits, but he finally feels good and his body isn't having to constantly battle just to keep him alive. His body can now focus on what it needs to, his development.
Words can not express to you how much this as meant to all of us. Our life has gone from one of almost constant, stress, to one where Max's medical issues can almost fall into the background.
Thank you from the bottom of our hearts.
I can't imagine what last June must have been like for your family in contrast to what it meant for ours. I have thought about this often, a time of intense grief and sadness contrasted with one of extrme joy. This was part of what kept me from being able to adequately express our thanks in a letter. How do you explain to those who have lost something so great, how much their loss has meant to you? How do you explain that their loss has saved your own family, saved your own young son?
Although we know nothing about your loved one, we think of them often. We hold them in our hearts and give thanks to them and to you whenever we see our son running, playing, laughing, eating....talking.
Thank you. Thank you. Thank you.
Jennifer, James, Max and Rowan
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