Tuesday, September 21, 2010

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..


brigette said...

Wow.. I had not idead it affected so many... so sad. How great you are to be raising awareness!!

Debbie said...

great awareness post...

I hope you don't mind if I link this to my blog...

2awesomekidz said...

Hey, what an adorable pic of Isabella!! Thinking of you guys and sending love!

Lisette said...

Thank you for sharing, I seiously had no idea how many children are affected by this. I am sorry you know this all to well. ((HUGS)).

Stephanie said...

Thinking of you!!!!! I remember the first time I read about this disease how shocked I was!

* ButterflyChik* said...

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Infertility Blog: http://ourjourneythrufaith.blogspot.com/