A Rare Skin Disorder?

I should be sleeping right now.  I have been going 24/7 since before the holidays began and am now fighting a cold. Tomorrow Gabby will have her well visit check up. Not looking forward to my little one getting shots nor the early morning. I am still awake tonight because my sweet soon to be 11 year old daughter has a family tree project that is due tomorrow and we were up 'til 11:30 together. The way my life works is you do what ya gotta do....so I needed to polish a little bit of her project, put a load of laundry in, and then pump for my little Gabby. As I sat pumping I came across an announcement for Rare Disease Day that is coming up
 28th. I am ashamed that I never knew of such a day. Never knew of Epilepsy Awareness month either until my oldest daughter was diagnosed in 2008.

"It's a rare skin disorder. Only 1 in such-in-such huge number (my interpretation) ever get this condition." That is what my husband and I were told over and over again after Gabriella came into this world. Rare. Why? How? Seriously? We have 6 other children and she is hit with a rare skin condition. Really? Incredibly hard to believe. I didn't want to believe & until about 3 weeks of having her home, 5 weeks after she was born, did I accept the fact that this is a life long condition. Yup, I was standing over her at her changing table where I spent many hours applying aquaphor-caring for her skin the best I could. Learning every day what would work and praying for something to work. We began to see what we thought was a cycle. Gabby's skin would seem to get worse every end of the month. So, when I was gently painting aquaphor on her that night my hand unknowingly went over a blister which broke. My heart sank and I then realized she isn't going to get better. This isn't some freak infection. It is the real deal, a "rare" deal, that Gabby has been given.

As February 28th approaches I will remember those who are suffering even more so than our Gabby with this awful skin disorder. There are many rare diseases that people all around us are living with. Let's take time to care.

 I now need to dry the load that was washed and get to bed! Its 2:30am!