This was supposed to be a post about Clara's visit with the pediatric endocrinologist, and I have tried to start this post three times, but honestly, my heart is so heavy for some other families, I don't feel like it would be appropriate to talk about my own right now. I will give you an update on Clara, but before I do, may I please ask you for prayer again for some other precious families who are struggling with mitochondrial disease?
Do you remember little Maggie that I asked for prayer for? Please continue to pray. Things are not looking good. They have taken her to the hospital to try to get her some relief, as nothing they are doing at this point is helping her. They have put her on morphine to keep her comfortable. I cannot fathom the pain the family is feeling right now.
I have another blog friend (whose name I will not mention for privacy reasons), but she and her family are also struggling with this disease and its effect on their son and their family. Even though I have never actually met these two families, I feel like I know them (to a degree) by keeping up with their blogs, and I have come to care about them both very deeply. No child should ever have to suffer, and this disease is not kind. Please keep both of these families in your prayers.
And when you think about it, please pray they find a cure. Progress has been slow in the last thirty years (for various reasons), but scientists have estimated that it is as common as cystic fibrosis....just not as well known. So it is not a rare disease, or group of diseases. Most people have just never heard of it, which makes it really hard to get the support that is needed for research to find a cure. I have never really considered myself much of an activist, but when you see something wreak havoc on people you love, including your own child, you start to get passionate about it.
I promise I will post the update on Clara's visit soon, but I just could not bring myself to post it right now when so many others are hurting.
Much love, my friends. Thank you for your prayers.