The NIH defines a disease as rare if it affects fewer than 200,000 Americans, or roughly 1 in every 1,000 (as stated on the Global Genes website, a non-profit advocating for rare disease globally). And if your child is that one, finding out why, and figuring out how to fix it, is nothing short of miraculous.
This is the story of Xander, a boy who started out life with too many red blood cells. This story is why I went into science, both because I am enthralled by the amazing details of life, and because I want to help when those details go wrong. And they go wrong in a lot of different ways so that there are some 7,000 of these rare conditions. The number of people suffering from these conditions is estimated at 25 million in America alone. So there are a lot of opportunities to help, whether through research, or drug development, or medical care.
For Xander, a dedicated team of doctors searched for answers to his puzzling condition. And thanks to advances in science, answers caught a tumor in time, and gave him a plan for his future.
I found this story quite by accident -- I was entering information about the Oklahoma Medical Research Foundation into the Biotech-Careers.org website. Biotech-Careers.org has information about, you guessed it, careers in biotech. Along with information about science fields and degree and certificate opportunities, the website lists biotech employers around the world, and flags organizations that have employed at least one graduate of a Bio-Link program. A Bio-Link graduate has been employed there, I wonder if they helped Xander and his family!