Share Your Story and Raise Awareness


Total Stories Shared
021

CLICK HERE to read past stories

How did you become involved with VBF? Why do you feel it’s important to raise awareness for vascular birthmarks and the related syndromes? Please share your story with us. Please email your photos and story to VBF at awareness@birthmark.org

Each birthmark is a story, and each family or individual shares a common bond, yet each story is exceptional. “Tell Your Story” to help raise awareness and hope for other patients and families.

MY EXPERIENCE IN 1972!
Dear all,

Maria ZuppelloMy name is Maria Zuppello, I'm 38 years old, I’m an Italian journalist living in Brazil.

I write you to tell my story. It’s sort of pioneer story because I was diagnosed with parotid hemangioma when I was 1 ½ months old!!! At that time my family lived in Italy, Rome, it was April/May 1972, so you can imagine how "primitive" was surgery, especially in Italy.

My parents always told me that they were desperate. After discovering a sort of small apple in my face the pelerinage started...many doctors, many hospitals, many people that wanted take advantage of a baby for making research (not always good research, but sometimes pure
experimentation). My parents didn't know how to do. At that time Internet didn't exist and US were really far away.

But I think that God helped us...my parents told me that a Brazilian surgeon came visiting my country for an important conference (unfortunately they forgot his name). An Italian doctor, called Sagnotti, was with him and they said "It' s not a cyst, it's a parotid hemangioma. She needs to get a surgery as soon as possible". Professor Sagnotti (unfortunately he's dead now) was the surgeon that in June 1972 made the surgery at San Camillo Hospital. 7 hours, with a cameraman inside (it seems that the film was sent to Zurich, in Switzerland, where there is a big neonatal center), ether used as anesthetic. My mother was told that the surgeon, before starting the resection, counted all the nerves around and he did the same at the end.


Unfortunately I have no pictures showing a close up of the "apple", how it was called at home but I want to send you my picture now. Never had a plastic surgery, never had problems with epilepsy. On the contrary, I think that babies suffering as we did have something more in the life, sensibility, brilliantness, optimistic sense of life. We are really more rich. I lost my parents but I never will stop to thank them for the huge help that they gave me.

Science is always a miracle (even in 1972), but love of our family is too.

Good luck to all the families involved in this problem!

Hug from Maria, a "very old survivor"

MARIA ZUPPELLO