Rare disease day

Words of healing

6:00 AM Friday Jun 3, 2011

A mother's account of the death of her newborn son has been turned into a book in the hope it will help other mothers heal. Rebecca Blithe meets the author. "The specialist said, 'You're going to have a normal baby'," says Ann Chin, as she sits with a pile of her recently published book, Diary of a Bereaved Mother.
But the days that followed the birth of her son, Andrew, proved anything but normal.
"Once I had my baby they realised he was dying," she says, of his diagnosis of Campomelic syndrome; a bone and cartilage condition resulting in short limbs and breathing problems because of a small chest capacity.

http://m.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=11597016 

My Son Andrew had Campomelic displasia  or syndrome.  It is a rare disease.


http://www.rarediseaseday.org/article/what-is-rare-disease-day 

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.