My baby sister :)

Adrienna is one of the strongest people I know, and at the ripe ole age of 15, I consider that amazing. She fights through the dirty stares, whereas I fight to stop them. Over the years I have learned what stares are curious, and which imply to stay away or you might catch it. Of course there will always be nasty people in this world, but I will try my best to protect her from all of them. She deserves a simple life, but with being in and out of surgery all the time it never seems possible. There is no cure, the doctors can just prolong her life and make her more comfortable. New nasal passages, new tubes in her ears, a new nose and soon new teeth. I am trying desperately to find someone who knows someone, or is someone with Craniodiaphyseal Dysplasia. I want her to have someone in her life that can share this with her. She is so strong already, but I feel with the support of a fellow survivor she would be unstoppable.

Report post
Join our Gaucher Disease Support Community today!

Things you can do

Support Genetic Alliance

Help Genetic Alliance reach its goals and support people like yourself by making a donation today.

Donate to  Genetic Alliance

Join our PNET patient community today!

Join the Cushing's Disease Community on Inspire Today!

Discussion topics

Community leaders