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..