HOPE. It's is in our GENES
As year 3 of parenthood rolls right on by, my voice begins to elevate further into the world. One single voice , enrolled, to decipher her son’s expressions. Translating the communication of his experiences with writings, my own skewed scope. Why share? Why give Voice? To spread the vision of rare disease. Rare individuals DO positively impact our world. We were welcomed to parenthood with a RARE experience, but not as rare as some families’ lives. The families we now relate with, some never even having met in person, but we share these rare experiences, that are even rarer from each and every rare child. According to globalgenes.org 350 million people worldwide suffer from rare diseases. Approximately 50% of the people affected by rare diseases are children. Imagine this… if all of the people with rare diseases lived in one country, it would be the world’s 3rd most populous country. But, WHY do we not hear about these rare diseases? It is hard for one single v