Wednesday, September 21, 2011

Day 3 Mito In My Eyes

I decided to start this blog today, honestly, so that I could help raise awareness of Mitochondrial Disease. I never imagined myself a blogger, but I've always imagined myself a mother, and this is really all for my daughter Jordan. So what exactly is mito you might ask? Well, most people would google mito and happen upon the UMDF website and click around and read about this devastating disease, it's incidence rate statistics (which is alarming), and any other textbook information that they present. Here's what you won't find there- here's the non-textbook version. Mito is my daughter's sleeping yet active giant inside, robbing her body of energy.. vital energy needed for her body to function properly. Looks can be so deceiving... for she is a beautiful and amazing child... and on most days, days when we can manage the balance of activity and rest she looks like most other kids.

What you won't understand from reading the UMDF website is what it's like to mother a child with the disease. You won't find out on the UMDF website, or any other website for that matter, that a simple cold can land my child in the ER.
Or that flu-like symptoms can cause an 8 day inpatient hospitalization.
  Or that a fluke fever can cause her GI function to stop in it's tracks.

You won't find out that my child who can do a cartwheel and hang upside down from the monkey bars can't make it through the airport without her wheelchair. 

You won't find out that though I tell my daughter every day that she can do whatever she wants to in life, I know inside that I really don't know if she'll make it to high school. These are the sides of mito that I deal with every day. You will see that there are varying degrees to this disease, many causes and forms of this disease, and that not all people with mito are affected the same. My daughter is affected in many ways, but if I had to rate her, I'd say she's in the moderately affected category. She is bright, a straight A student, loves to sing and dance, plays poker, can ride a bike and is crafty.

She also has a feeding tube, about to get a second one, becomes ill without a cooling vest or an hour nap every day, cries because her legs hurt, regresses from fever, and has debilitating headaches.

I see that mito has the same incidence rate as pediatric cancer, has no cure, no real treatment, and no one knows about it. That's the problem here... no one knows about it. That's why I'm on here opening up my life, my personal journey in parenting a child with mito. I want everyone in the world to know about this disease. Maybe someone out there will read this and care and tell someone else ... starting a trend.

Thanks for visiting my blog today... and I hope you pass along the link.... and in turn, spread awareness..


  1. Great post. I have two kids with Shwachman-Diamond Syndrome and secondary Mito. I blog a lot..... to raise awareness of two different rare diseases. Thanks for sharing.

  2. fantastically written! it was almost like ready my life but about two sweet boys - one of which has a port and a GJ tube, requires a cooling vest (or a good bottle of water to soak his head with) and wears a CPAP. he's super smart and he takes naps in the mornings after only being up a couple of hours - but then he may bounce off the walls until he runs out of energy again. simply playing the WII all day landed him in the ER getting fluids....and he wasn't even really being all that active with it. it's so scary and frustrating. the people not knowing is the problem, you're so right!


  3. Well said my friend...well said. You are already making a difference!!!