Wednesday, February 2, 2011
I have been adding links on the sidebar to blogs where mitochondrial disease is a topic the blog author is familiar with. Most of the blogs are primarily dedicated to updates about an individual or family who has been diagnosed, and struggles with the various complications mitochondrial disease brings.
There are many children, and even adults, struggling with a complex and complicated, sometimes difficult to identify and diagnose, form of mitochondrial disease. When I read the updates when a child is in another crisis situation, it makes me hope with all hopes that their crisis is abated and that there is more time for the testing and treatments that are being developed to be a help to them. That in the meantime, whatever tools the medical community has can keep them alive and minimize any more trauma or progression of the disease. I sometimes read how time and again the crisis is overcome, and I have a sense of relief, though never satisfaction.
These blogs sometimes make me wonder if Dominic and Bridget were affected with some other complication, because so often the hospitals and doctors seem to be able to stabilize the situation until another crisis comes up. We only had one big crisis event with Dominic and that is all, and they didn't survive. Only one big crisis event with Bridget, also, and she did not survive. If they really had mitochondrial disease, wouldn't they have been helped like so many of these other children I read about are helped? Wouldn't we have had a little more time before the disease progressed and took them away? With so many tests we have had without answers, I just have to wonder that though it might be mito, what else might it have been? And what else could it be affecting others of my children and even myself?
The uncertainty, whether diagnosed or not, makes mitochondrial disease that much more stressful. I related (though we have no diagnosis) to the sentiments expressed in this article: Coping with Mitochondrial Disease - How do you cope with the unpredictable, invisible disease?
I still find talking with other parents who do have a diagnosis to be helpful in deciding what specialists to follow-up with, what tests really are a good idea, how much or how little to do in regards to a certain symptom... I have met more parents, though, who are dealing with the grief of burying their child(ren) than I have met currently trying to manage the disease. That is the most heavy part of the disease, IMHO - that you face the real likelihood of burying a child! That it can affect others that you love! Some of the Mito Mates I have listed have just recently faced this "bad outcome" (and I wish the medical terminology wasn't so clinical about such a sensitive reality for families). Some have had some time, but are still working on finding the genetic "proof" of a clinical diagnosis. Most are hoping to avoid that "outcome" for as long as possible, though for some they're right now in that fight for their life.
I appreciate the willingness others have of sharing their experiences. I am glad that technology that lets me "connect" to people I've never met. I feel I do know some of these people just because I know some of the things they've been going through and are going through. But I admit that meeting someone in person makes a real difference to feeling truly connected.
I first read about Maggie Agnew on a news station's website, the headline "Little girl's illness baffles Utah doctors." Some of the symptoms this little girl struggled with, and just the way she looked, made me immediately think mitochondrial disease. I noticed there was a carepage set up on the fundraiser information, and eventually I found her mom's blog. I started following Maggie's story, feeling at times her situation paralleled some of what my youngest was experiencing - and they were born only 6 days apart!
But as we've been able to see our child continue to progress, Maggie has been declining. Even though my youngest is very behind for growth (not even on the growth charts), Maggie is still so much smaller! Here is a picture of them both with Maggie's mom in early September:
Maggie is on the right, and you can see her tiny legs compared to my little girl's legs, for one example. Since then, Maggie has continued to lose weight and my little girl has slowly been gaining. So there is about 10 pounds difference between them now!
When I first read about Maggie, they were still trying to understand why she was having so much difficulty. Eventually Maggie went to see specialists in Boston, then Atlanta, where she was finally diagnosed with mitochondrial disease. She has been a trooper and been through so much. Currently, she is battling infections, including RSV. And today she is going back into surgery because Maggie pulled her g-tube out and there is bleeding.
I wish I knew how to help families who are faced with these challenges. How to help comfort little ones who are in pain because of a terrible disease. I don't know if mitochondrial disease is what caused my childrens' deaths, or if it will claim anyone else in my family. But I know mitochondrial disease is real. It's debilitating. It's devastating.
All those of you that I have found online who are facing so many of the difficult or unanswerable questions of mitochondrial disease, you have been on my mind. I even say prayers and ask for help from a higher power through all the difficulties. My faith is not sure, but my hope is there. And just as I Hope for Maggie, I hope for all those affected with the "invisible disease" to have the strength and insight to face the disease in all the ways it manifests.