Ben Blake- My Request for a Gift of a Directed Liver Donation July 1, 2016

www.benblake.org
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 persons 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 babys 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 enjoyed many wonderful blessings in my life
a great 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 doctors
visits over the course of my life. I still take large amounts 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 if 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 781-492-2361
(duane.blake@comcast.net), or my mother Jackie Blake at 781-492-1882
(blake@sdac.harvard.edu). 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 for reading my letter.
Ben Blake