miércoles, 30 de enero de 2008

Univision: My first chance!

I came on TV! My mom always wanted to be part of a TV program, but she never thought that it would have been letting the world know about my life's story.

We are very happy and very thankful for the opportunity that was given to us by Channel 23. My mom was able to tell my story to many people hoping to find people willing to contribute towards my ultimate goal (be able to raise funds for my treatment) and or find a non profit organization that can give us support.

My mom, my sister Paloma and I were interviewed by Primer Impacto, Univision.

Look at me on TV: http://video.google.com/videoplay?docid=-4222940489363967261

My current situation

This is my very first Christmas, everything seems normal if it was not for the little eczemas on my face and body. These are part of symptoms of Wiskott Aldrich Syndrome.
Fortunately, as of now symptoms are not critical but as time goes by they will weaken my inmune system. And infection diseases such as leukemia or lymphoma may develop.
My life expentancy is between 2 to 10 years unless I receive a bone marrow transplant. As you know this medical procedures are very expensive that's why I depend on the help you may give me in order to have a second chance at life.

How I was born

Apparently I was born a normal baby and as all kids when they arrived, my arrival brought joy & happiness among my family. But one week after I was borned, my parents noticed some light bleeding on my diapers and it increased as time went by. When I turned two weeks old, I got a really bad cold that's why my parents called the doctor and besides taking care of my cold, ordered some lab test to find out why I was bleeding. The results were confusing. No infections were found but I had a low platelets count. That's how everything got started, a story of admissions to clinics and hospitals, blood and platelets transfusions.

If you think it is difficult finding veins on an adult, try to do it in a little baby. They tried several times to find them. I have done two endoscopies and two colonoscopies. The bleeding was caused by a very serious allergy and affected the mucous around my colon. Finally a light at the end of the tunnel, a bone marrow test that revealed there were no cancer cells. But even at that point, nothing was clear yet.

Then another problem came up, an eczema on my head, a bleeding wound on my rectum. From the beginning my parents thought that it was related with my grandmother's genetic illness. Two uncles passed away with similar symptoms before they were a year old.

Finally Dr. Enrique Massa, pediatric hematology specialist that was treating me, suggested a trip to USA, Gainesville to meet Dr. William Slayton at Shands Hospital where finally they diagnosed this terrible illness that my mom refused to accept.