did you know??

Did you know that 80% of children diagnosed with Mitochondrial Disease before the age of 5 will not survive to see 20 years of age? If it was your child, would this statistic be acceptable to you?

(the average life expectancy for the exact type Ella had is 9 months)

Did you know that, 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.   While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers.  Many are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging.  Still others aren't diagnosed until after death.  

Did you know that the parts of the body that need the most energy, such as the heart, brain, muscles and lungs, are the most affected by mitochondrial disease. The affected individual may have strokes, seizures, gastro-intestinal problems, swallowing difficulties, blindness, ...deafness, heart and kidney problems, muscle ...failure, heat/cold intolerance, diabetes, immune issues, and liver disease.

Did you know that mitochondrial dysfunction is connected to common diseases such as alzheimers, parkinsons and autism spectrum disorders?

Did you know that mitochondrial diseases are not as rare as you may think? 1 in 200 people carry a mutation that may develop into a mitochondrial disease.

Did you know that there are currently no treatments, cures or anyway to help one with mito? vitamin treatments to try and help restore some energy is all there is. There are many studies out there, and I believe there is a study out there that will work as a cure, but there is just simply not enough funding..so instead children and adults are suffering daily. We have treatments and cures for Erectile dysfunction, hair loss, acne, and so many more minor ailments, and not one for this disease..

Did you know there are many ways to give, funds that will actually go directly to research and raising awareness..click on the link on my sidebar for Ella's research fund, or go here and print to mail in the form, or book mark the page and donate..

can't decide if you should donate or not? even if its just a one time donation of $5.00 it is help and we appreciate it so very much.. and so do each and every single one of these faces..

Photo and video editing at www.OneTrueMedia.com



Have a second?

Take a minute to go ooohhh and ahhh over Ambers sweet little kiddos :) and read this great post she had today...

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 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..

faces of mito..

***before you start, scroll to the bottom of the screen and silence the sound on my play list..xoxo

Make video montages at www.OneTrueMedia.com

Mito moms and dads

Mito Moms and dads~

 On Monday and probably Tuesday I will be working on a new "faces of mito" slide show that I will put to some music.. If you would like to participate, send me a pic, with name, age, and kind of complex or what they have, and DOB-DOD if applicable.. I will post and share on Facebook as well as my sites..my hope of doing this is to raise some awareness..to let people know that mito is prejudice to no one, gender, race, age, etc...SO if you are interested please email me a pic and info @ AButterfliesdream@ymail.com..also please feel free to share with other mito families.. I haven't been able to get on P2P in a while, so if you are reading this and wouldn't mind posting..the more pics the better..thanks! Jen

I really HATE mito..

I've followed a couple of blogs of mito kids since Ella got sick and diagnosed.. I always looked to these "older" kids as encouragement.. maybe Ella will make it to their age..sadly she didn't.. I've been praying and cheering on these kids and little brody passed last week, and Gavin and sweet Abby are both struggling with their own issues now and could really use any prayers.. I hate that this disease robs these kids of their childhood..their normal every day childhood.. they deserve it.. I hate that the parents have to worry with ever sneeze that "this could be what does it".. I remember that feeling and it made me about crazy..