Friday, September 23, 2011

Day 5 Mito in Our Lives

I find myself sitting here today, beaming with pride. I’ve long known that my daughter is a very brave child, yet today her level of bravery amazes me. This week as you know is Mitochondrial Disease Awareness week and I’m doing all that I can to raise awareness with all my capability. My daughter Jordan is a very private child, so when I asked her how she felt about sharing her story of mito and its effect on her life, her response was not surprising: “I would but I don’t want anyone to think I’m weird”.  After a very tender talk with her, she began to understand the importance of sharing her struggles with mitochondrial disease. Today, she took it a step further and shared a very personal side of her life with her entire class. Below is a recap of what happened today from her third grade teacher..

Today Jordan shared the book Energy Makers & Mito Kids with our class.  It is such a great kid friendly book that describes what Jordan deals with daily. I’m so proud of her decision to read this book aloud to our classmates, she did an awesome job!  J As she read, I noticed a lot of facial expressions on her classmates faces.  Many of them were like….so that’s why Jordan does this or so that explains Jordan’s nap every day.  It was wonderful to see, they truly know why now!  J  When Jordan was finished reading she even answered some questions about Mito that her classmates did not understand.  Once again I was like …. WOW!!!   She then went on to share about her upcoming surgery that she will have this October.  I was thrilled to see how upbeat she was about the surgery. She explained to us why the surgery was necessary, and why it is beneficial to her.  I’m very proud of her for sharing this information with us today. She is such an amazing child and I pray that one day they will too have a cure for Mito.  She truly made me smile today!
P.S. Even though she was not here for some of this week, we wore our green Mito ribbons in her honor!!!  

How amazing is this child? If Jordan is willing to place herself in the spotlight in an attempt to educate and spread awareness, I ask you, how far out of your comfort zone will you step to try to spread awareness? This disease is killing children across the globe yet most have never heard the name mentioned. Please take a stand, stand with us to spread the word, and let’s stand together and raise awareness.

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..