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 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 voice to be heard. You here the voice. Will you listen? Will you share? It is the help of our allies I’m seeking today!
This year on Tuesday, February 28th 2017 a rare community will unite to create HOPE with the simple act of wearing jeans. Join us to impact our world, raise awareness, show that you care, and have hope in genes! But the act is only relevant if you share your voice, speak up as to why you are wearing jeans for genes! To refresh yourself about Archer’s rare genes read here!
Archer does not have an overarching named diagnosis, 3 regions of rare genes have been identified, but impacts unknown, clearly in our case rareness was born. It is with hope our child learns to thrive. It is with hope our child is happy in his own skin. It is with hope that communities unite. Please wear jeans on Tuesday the 28th, and SPEAK up for HOPE in our GENES!