26-year-old needs second liver transplant, trying to recruit donors
Ben Blake- My Request for a Gifted Liver Donation – June 4, 2016
My name is Ben Blake. I am a 26-year-old college graduate living in Massachusetts with my family. You and I have probably not met. But even so, you may be able to help me in my search for the most unimaginable gift. To be blunt, what I need to continue living is a donation of a whole liver (and related biliary tract) from someone who has recently died. If I am successful in finding an organ, the deceased person’s donated organ would be transplanted into me at the Massachusetts General Hospital, in Boston, MA. Unfortunately, because of the complexity of my case, I am not a transplant candidate who may receive a liver (or a portion), from a living donor. My donor must be deceased. This gift of a liver will allow me, a young person trying to continue his own life, to have a life and future.
My story of needing a liver began a long time ago. I was born in Albany, New York, on May 23, 1990. Shortly after being born, my parents were told that I was in dire need of a liver transplant. I entered this world with the cards stacked against me – I do not feel sorry for myself, but that is a simple fact. At birth, I suffered from a rare disease known as “biliary atresia”, which had destroyed the functional parts of my liver and bile ducts. In biliary atresia, the bile ducts connected to the liver are blocked at birth or become inflamed and blocked soon after birth. This causes bile to back-up and remain in the liver, which then destroys liver cells rapidly and leads to ‘cirrhosis’, or scarring of the liver. Unfortunately, even today, there is no cure for biliary atresia, except for the transplant of a new liver from a donor to the sick person. During the time that I was born, few children with biliary atresia lived beyond the age of two. So, as a seven-month old baby, liver transplantation was in its early stages, and I was lucky enough to receive a new liver in 1991. That liver came from another baby who had tragically died. I never knew that other baby, but the baby’s parents still donated that liver to me, and allowed me to live. I could not be more grateful for the life that I received based on their unbelievably generous gift – a gift that they gave under terrible circumstances.
Because of the gift I received, my life has been, as you can imagine, a little different from most people my age (or any age!) I have had many of the best things in life – a family, an education, and great friends. But on the other hand, I have battled with diabetes, which I developed due to the medications that I have to take every day, and have been a ‘regular’ at the local hospital, having had somewhere around 1000 doctor’s visits over the course of my life. I still take huge amount of medicines every day, and have to watch carefully how I treat my body
Over the last 5 years, and after twenty years from receiving my liver, my transplanted liver started to wear out. So since that time, I have been waiting, hoping and praying for another organ to come to me. I am often sick, or not feeling very good. But because of the long list of people in need of liver transplants (people of all ages), I have not been able to move up the list and receive an organ, as my young body does not reflect my illness like an older person would. But I still have hope. I am allowed to accept an organ donation if it is donated directly to me from another person, upon that persons’ death. That means that if you or a family member were to donate a liver directly to me, upon your death, I would be able to receive that specific donated organ, which would be considered your gift to me. My request is legal, like any gift-giving. I cannot pay for the liver – it must be a gift. Anyone is free to give their organ to me. Because I am in such great need of a second liver transplant to live, please consider if you would like to donate to me upon your death, or know someone who might donate to me upon their death. If you do, please let your next-of-kin and/or family doctor know of your wishes.
If you would like to donate, please contact my father Duane Blake at 7
81-492-2361 (firstname.lastname@example.org), or my mother Jackie Blake at 781-492-1882 (email@example.com). My father or mother will connect you or your family member with the appropriate people. You may also sign up to donate at my website: www.benblake.org. If you do decide to donate to me, it is very important to let your next-of-kin and/or doctor know of your wishes to donate specifically to me upon your death, so a record can made while you are alive of your wishes to donate your liver and biliary tract directly to me upon death. Please also know that a person or family can donate to me regardless of where in the United States the death may occur. Lastly, and also very important, I ask that everyone who sees my letter help me to spread my story to others in any way that you can; if you know or hear of anyone who is dying, or has very recently died, please make that person, or their family aware of my great need of a donation, and my desire to live. Your help in doing this small act might make a very big difference in my life.
Thank you again, for reading my letter.