World Rare Disease Day hits VERY close to home.....like my 5 year old daughter close to home. Having a child with a rare disease is a different set of challenges.
Hopefully I can type out everything racing through my head right now. I get so many thoughts going, it becomes difficult to extrapolate them.
First off, our daughter doesn't have it as difficult as some other kiddos who battle, EVERY SINGLE DAY, with some rare condition. Our Elsie has Hirschsprung's Disease, read more about it here. Now, just because her situation is relatively manageable doesn't mean she isn't without challenges. I'm not going to go into details, I'll just say we've purchased enough butt cream to keep the small segment of the medical industry in business for forever. Not to mention baking soda, for baths, to soak her poor, rash-open sore laden bottom. Not to mention the SCREAMING when we have to wipe down her rash laden bottom because the open sores are everywhere. March 8th, actually, we go into Children's Hospital for a procedure that should given us some info and answers as to how to proceed because her situation isn't improving at all. Maybe even gotten a bit worse. What I mean by that is, her intestinal system hasn't outgrown this like it was initially hoped. The bottom line is, she's staring kindergarten in the face, wearing a diaper because not only is she not potty trained, she has ZERO clue on how to tackle that challenge. The answers we may get, could tell us she, in fact, needs to have a colostomy bag put back on. It's all quite frightening.
I've struggled with what we can do for the Hirschsprung's community, because I'm not really sure what there is to do, so I just post things like this in a hope to spread the word about the disease because if not handled properly when a child is born with it, it can turn fatal or have much more serious complications. That link above, here it's right here again, has all the symptoms to look for as well as the basics of the disease.
So, today, I just hope to spread the word. And shine a light on just how wonderful and special our little girl is who bravely kicks this disease in the butt every single day, largely not even being aware that she's doing so. She just thinks that diapers, a constantly aching butt, daily baking soda baths and multiple surgeries are just part of normal life. To find out more about World Rare Disease Day and why it exists, CLICK HERE
She is a wonderfully intelligent, kind hearted, caring daughter, grand-daughter, big sister, student, aspiring dancer and actress and we're going to do everything we can to get her to the heights we know she's capable of.
At the very bottom.....check out a video made by some really talented people a few years back featuring an amazing song Matt Hires wrote about our daughter and our experience at the Ronald McDonald House.