My name is Francis X.
Kennedy and I was born in the St. Francis Xavier Hospital in the Bronx on April
4, 1957. I was the sixth child born to my parents by that time (they eventually
had two more babies). My mother says I was a healthy baby boy with no reason to
believe I had anything wrong with me. She took me for my six week check up to
our family doctor. By this time she had suspected that something was not right
with me ( a mother's intuition).My stomach had begun to swell. Her doubts became
real when our doctor, Dr. Bopp, took a book down from his library, flipped
through it and told my mom that my symptons resembled a little known and very
rare disease, Chylous Ascites.
At the recommendation of Dr. Bopp, I was immediately admitted to Westchester Square Hospital in the Bronx, where the first in a series of incisions below my navel was performed to drain a milky white substanse from my abdomen. This procedure was performed by a Dr. Wan. It became evident after a week that I needed to be transferred to a more capable hospital and I was sent to NY Cornell Medical Center in Manhattan. From mid May till the middle of November, 1957, I was a patient in that hospital, growing weak and dying. The doctors had told my parents that there was nothing they could do and that only a miracle could save me. My mother would leave the five other children in the care of my grandmother and take the subway, each day, from the Bronx into Manhattan, to sit by my crib side. My father, would then visit me after work.
After several months of doing this, my mother grew so despondant that she could not find the strength to visit me in the hospital and watch me die. Both of my parents are devout Catholics and they knew that they had to put the fate of my life in God's hands since they were told that medically there was nothing the hospital or the doctors could do. My mother gave my father a Holy Scapular Medal which he put over my shoulders, resting on my chest. My father continued to visit me daily in the hospital, watching me rock my emasciated body to sleep since I was too fragile to pick up and hold. Daily mass at the local church helped reinforce his faultering faith.
After months and months of this ordeal, my father walked into the hospital one evening and was told by the doctors that the leakage of fluid had mysteriously stopped. My father said he would never forget the words of the doctors, "I don't understand it, Mr. Kennedy, it must be a miracle." My father knew at that time that his prayers had been answered. After gaining my strength back, my mother would take me to the NY Hospital where the young interns would poke and probe me, trying to learn more about a disease I was not supposed to have survived. My mother told me that of the ten cases the hospital had of infants with Chylous Ascites, I was the first one to survive and my records are supposedly in the medical books stating this.
As I have written to you before, I am a 41 year old healthy 6'4" male who is married and has three children of my own. The only visible scar I have of my illness is an incision below my navel which makes it look like I have two "belly buttons", something as a young boy I was very self conscience of and other kids made fun of. But today, that scar reminds me that I am a miracle of God and for that I am eternally grateful. Grateful for the parents that loved and nurtured me and for their undying devotion. I never really thought much about the disease that almost claimed my life until my brother sent me your e-mail address. I had always assumed that 40 years later this disease was non-existant or at least easily curable. I was shocked to read that it is as much a mystery today as it was back then, with no cure known. The fact that your daughter is alive and healthy is continued proof to me that there is a God and that His miracles continue to work in our lives today.
My mother used to tell me that God saved my life for a reason. She said that maybe I would be a doctor or a priest. Well, I'm neither, I'm an engineer. But if I helped to give you hope in that your daughter's life can be long and fruitful, after surviving this disease, it gives my life more
meaning. My parents were a big influence in my life and with your loving guidance you will be too for your daughter, Syenna.
Good luck and I will continue to read your web site and try to learn more about this disease.
Frank X. Kennedy March 15, 1999