Words of healing
6:00 AM Friday Jun 3, 2011
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.
My Son Andrew had Campomelic displasia or syndrome. It is a rare disease.
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.