[Lina]

I was told 'no' when my 3 day old son was also diagnosed 11 years ago. I was diagnosed when I was 9 years old which is also rare. I first had the ventricleostomy done but 10 days later had the VP shunt put in after going into a coma. I had 12 more surguries till the age of 15 years, but have been fine now for over 20 years. When my youngest son was born and diagnosed at 3 days old, he was born with a regular sized head, I then began wondering about the genetics behind it. He was also given the ventricleostomy at 13 days old and has been fantastic for the past 11 years.