|Our story is really complicated. Our daughter was born on September
16, 2004 and it was for us a surprise to know about her disease. Since she
was a newborn she was in the hospital and she had three eye surgeries and
one skull surgery. But all this was not enough and she died on January 22,
2005. You can imagine what was for us to see her suffering through five
months of her life.
Our interest in your server is to know more about this kind of disease
and also to keep in contact with other families with the same problems. We
want to let you know that the DNA mutation she had was "de novo", this
means that nor me neither my wife have this mutation in our DNA.
Antonio and Stefania