Meet Addie and Nathan! Addie is a sweet and charming eight year old with a twinkle in her eye and great fashion sense. Hopefully we will see her performing in Summer Stock Theater next year in Plymouth. Nathan is six and I was reminded every second of our time together of how much I love what I do. Nathan has Cockayne Syndrome (see below). We all worked together to get a smile from Nathan and when he smiled he lit up my heart.
Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, premature aging, microcephaly, sensitivity to sunlight and developmental delays just to name a few. These children have a shorten life span due to the multiple complex medical issues (average of 4 – 7 years). There are only 200-300 children in the world with this rare genetic syndrome. To learn more about Cockayne’s Syndrome please visit http://www.cockaynesyndrome.net/main/AboutCS.aspx