Introduction

Greetings! I created this blog as part of a project assigned to me by my Healthcare Genetics professor. We are to present a genetic disease through a web-based technology. I chose to work on Menkes disease because my son is very good friends with a boy who's brother was born with Menkes disease. Lucas and his family has had a terrific impact on the rare disease world, partly because his father is a talented film-maker, and partly because they are an incredible example of human resilience. They function as a very happy family who lives life fully despite the challenges of raising a terminally ill, medically fragile child. As a healthcare student and nurse, I feel that it is important to convey the facts, but I want to try and keep the disease human. It is a disease that effects entire families and communities. Please feel free to comment. I am certainly not an expert, but I might be able to direct you to your answer.