
03/01/2025
February 28th is rare Disease Day. Today our family recognizes Clover and her beauty despite the rare disease that ravages her body. I’m posting this today because as much as we fight for good doctors, medication and therapies to help Clover we fight more the ignorance of the world she lives in. The everyday life that she deals with, the “you look fine”, “you run funny”, “you miss so much school”, “you’re back in school so you must be fine”, “what’s that rash in your face?”, “why are your eyes swollen?”, “why do you drop things?”, “why are you slow?”. The list goes on and on. I ask tonight that you please take the time to read the chart that I’m posting. It’s so insightful and explains not only what Clover feels physically but also the emotional side. Today brings awareness worldwide to the people that suffer with rare diseases. We pray for them and for Clover. We live for the hope of heaven where there will be no pain or disease. Thank you for your love and support—Elisa