Monday, June 21, 2010

you won this battle, but believe me when I say, the war is far from over....

~Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.

~Each year, 1000 to 4000 children in the United states are born with a
mitochondrial disease.
I've been thinking alot lately about mitochondrial disease and how it has changed us. How 2 years ago, we really didn't even know what it was. We knew it had something to do with the liver and is extremely rare, and even though Jay's cousin lost 2 darling children to it, it was not something we had to worry about..Wikepedia describes rare diseases this way- A rare disease, sometimes known as an orphan disease, is any disease that is not common. not common...did you catch this part? ~Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.  Thirty minutes, in the time we sit down to watch Survivor or big brother, 2 children are born with a death sentence..How is that even possible in the year 2010? How is it that most don't even know what this disease is until it smacks them in the face..unsuspecting families bringing their babies home to keep forever, to watch them grow into adults, have their own children...thats the plan right? There are so many awful diseases out there, and by no means am I trying to minimize any others..I just do not understand how in this day and age, we have a cure for wrinkles, we have a treatment for erectile dysfunction, hair loss, and so many others...but not for this..not for a disease that if you are lucky enough, get to live into adulthood..and I very loosely say lucky..they do not get to walk around and just feel good, party, play sports, watch thier kids, its not like that...most likely they fatigue so fast they can barely do anything, they have severely low immunity, they have muscular diseases, renal failure, hepatic failure, seizures, severe headaches, I could go on and again..erectile dysfunction has a baffles me..
mitochondrial disease stole my baby from my arms. My laughing sassy toddler, my kindergartener who would have been fine when she walked in, leaving mom the one crying in the hall secretly watching, my tween daughter and her first crushes, boyfriends, first kiss and first heart ache..I will never get to explain to her that it hurts now, but there is so much more to come for her..good things..Prom dress shopping, graduation and wedding dress shopping...having her own babies..our grandchildren...its all gone..because there is nothing to do..sit and wait for her to get worse..for her time on earth to be done..
Mitochondrial disease has given me a broken heart, but also given me a voice. A reason to feel so passionately about something..a will happen in my lifetime..It has given me faith in God, when I hit the bottom, the very bottom of a dark and scary hole, I hear his voice reminding me that he is with me, and he is going to help us through this.. he is going to provide light again..He reminds my heart that right now there is great suffering, but one day, there will be great rewards..stay close, don't fear, I am gonna take care of you..this is hard, it is so easy to walk away..what has faith done for me, what did praying for Ella accomplish? She died..even though I prayed and kept faith..We were never promised it was going to be easy..I have to keep the faith that one day, I will see her again..I believe it in my heart..she knew God would take care of her no matter what why wouldn't I believe it too?

Mitochondrial disease may have won this round, but not this war...with prayers, faith, support and lots of work, we can beat it.. if you are reading this and want to help visit the side of my page there is a link to the Isabella Magee research fund, you can also donate in other ways, visit the for more info..


Kelli said...

Jen, thanks so much for sharing this with us. You have put into words so many things I have felt since my son was diagnosed with Mito. I still have my precious Christopher here on Earth with me but his precious twin is awaiting us in heaven because of Mitochondrial Disease taking it's precious life before we even got to hold it. You have put into words so many things...thank you...<3

Stephanie said...

What a beautiful and true post! Sending hugs and prayers your way Jen!!!!!!

Lisa said...

I haven't seen that photo of Ella before- it's gorgeous!
I wish for a cure so that Robyn and Lydia won't have to worry about losing their babies to the disease should it be passed on through them.
Since we lost Rachel almost years ago, so much has been many new genes found!

2awesomekidz said...

We will fight to see a cure for this disease. It cannot and will not take our children from us and get away with it! Thinking of you often! Sending all out love!

caitsmom said...

Such important information. Ella is so beautiful. I'm sorry she isn't on earth with her family. (((hugs)))

Holly said...

I pray that one day there will be a cure so that other families won't have to endure the pain that you and your family have. And they will be able to thank families like yours for helping the cause.

Karen said...

Thank you for sharing the info and stats about Mito and educating people - and for sharing your Ella's too-short life with all of us. (((Hugs)))