~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
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 grow..no, 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 on..so again..erectile dysfunction has a treatment..it 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 cure..it 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 happened...so 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 UMDF.org for more info..