About Sebastián

Hello! I am Sebastián Corbat, I am 37 years old and I am married to Angelica; we have two children, Florencia (5) and Vicente (2).

When I was 18 years old I was diagnosed with XLP syndrome, which means lymphoproliferative syndrome genetically transmitted by the X chromosome. Most of the people suffering from this syndrome do not survive the age of 10, being the bone marrow transplantation the only definite cure.

In the particular case of my family, who is the only one known in Argentina with this syndrome, my parents had 8 children, 3 of them died when they were kids due to causes attributed to the XLP syndrome. Only in 1991, when my eldest brother Gustavo was very sick, we discovered that this disease existed within my family. Gustavo underwent transplantation using my sister’s bone marrow at Hospital Británico de Buenos Aires but he died some days after. Now there are only Mariana and Santiago healthy; Gabriel who is 50 years old with hypogammaglobulinemia (he is administered immunogammaglobulin every 4 weeks); and myself with 37 years old. I had been well until I had mononucleosis when I was 26 years old and I had to start with immunogammagloblulin infusions as Gabriel.

With this treatment I was able to live a normal life and without complications until the beginning of this year when due to a general weakness condition I was diagnosed with severe bone marrow aplasia. This means that my bone marrow is generating very few red blood cells, white blood cells and platelets. This could become into a total aplasia, i.e.: my bone marrow will stop generating absolutely everything. Currently, I am under a supporting treatment (transfusions of red blood cells, white blood cells and platelets), waiting for the bone marrow transplantation which will cure the bone marrow aplasia and the XLP syndrome.

As the time goes by, my body is asking for transfusions more often, and therefore, the transplantation should be performed as soon as possible to avoid this condition to become worse.

Unfortunately, there is not any successful experience of (i) transplantations in adults, (ii) with XLP, (iii) with aplastic anemia and (iv) of unrelated donors in South American institutions. We know that without carefully respecting these procedures, there is a small possibility of natural survival. According to the specialists contacted around the world by my family doctor, it is recommended to undergo the treatment in a place where there are doctors with vast experience in institutions specialized in allogenic stem cell transplantation of unrelated donors for aplastic anemia in adults.

The specialists contacted worldwide by my family doctor recommended Seba to undergo the treatment in institutions where there are doctors specialized in allogenic stem cell transplantations of unrelated donors for aplastic anemia in adults.

Nowadays, the only medical team who accepted to follow the case was Dr. Joseph Antin’s team from the Dana Farber Cancer Institute (DFCI), Boston, from more than a dozen of medical teams in USA and Europe who refused. Dana Farber Cancer Institute is offering us a 75% survival chance.

The treatment lasts 12 months and within such period of time I must remain in Boston.

And this is the reason why we started to work hard with my wife, friends and family to make this dream come true, since I want to continue living together with Ange and my children and with your help we can succeed in this difficult stage of our lives.

We are eternally grateful for all type of help you can give us and all the cooperation to spread this page to the most number of people through Twitter, Facebook or Email, everything counts.

With all your small contributions we can make it happen. We need you!!!!

Seba, Ange, Flo y Vico

THANKS A MILLION!!!!!