Hello, my name is Heléne. I have four children and my latest, Johanna,
was born in march. She has Jacobsens syndrome. We live in Sweden and
this syndrome is very very rare. We, and our doctors, only know about
one more family in Sweden with Jacobsens. I am so glad that I found
You, and I am reading Your posts with an huge interest. I am still
trying to understand that this is really happening to our family and I
don´t know much about our, and Johannas, future.

I have a blog (in swedish) with a lot of pictures.
www.pasda.blogspot.com

I will probably come back here often to ask all sorts of questions.

/Heléne