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Thank you to our 2015 Saving Savannah team! Our walk total surpassed $115,000. Charlotte's Energy for Like walk in is the only one in the country that passes this milestone year after year. Your support and generosity helped team Saving Savannah raise $7,310 of that brining the total to date Saving Savannah has raised for the UMDF to over $40,000! We also smashed our team recruitment goal with 245 walkers making team Saving Savannah once again the largest team of any Energy for Life Walk. I especially want to thank those of you who came out to walk with us today. We know it's not easy to swing a Saturday morning in October. It meant to the world to us to have you wear a fuchsia shirt and show up to put in some miles in support of finding a cure for our super girl. We are immeasurably blessed to have you beside us. Thank you ALL for everything you've done to make this year's walk a huge success.

Today is the last day of pediatric cancer awareness month. We just wrapped up mito awareness week. As the mother of a child with extremely rare tumors called osteoclastoma and as the mother of a child with Mitochondrial Disease I feel like I have walked in both worlds and my heart is to see both of these devastating diseases irradicated from the earth. They are both absolutely life-consuming in every sense. In our experience I do see a huge disparity between the resources and support available to Savannah and what was available to Sebastian. I see a difference in the communities organized around these two causes and I honestly have seen a difference in the outlook. We were given hope for Sebastian from day one. For Savannah we've had to find manifest it ourselves. I've had to fight harder for her each and every step of the way. I long for the day when there are dedicated mito clinics and treatment protocols of any type. I long for support programs and camps and recognition of it among doctors and the public.....I long for the day there are Mito "Survivors"....All of that doesn't mean I don't I care deep down to my bones for BOTH causes. I want there to be no more Mitochondrial Disease just as much as I want there to no more cancer. I want to see both wiped out entirely. Why do I shout from the roof tops then about mito? Because in my heart of hearts I believe, like many scientists are beginning to find, that researching mitochondrial dysfunction will lead to a cure not just for Mitochondrial Disease but for cancer as well and a plethora of other diseases. I scream for mito because these kids have nothing. It's like the difference between going into battle with a sword (treatments) and an army (knowledgable doctors) and going into battle with your bare hands. No child should have to fight these battles at all. Putting whatever statistics about mortality and incidence rates aside I ask that you wake up and support both. Both kill. And they kill painfully. And while they're killing the affected, the parents are dying on the inside.....while fighting desperately for the life of their child. Support Mito. Support Cancer. They are both worth a cure.

As we close out Global Mitochondrial Disease Awareness Week we just want to say THANK YOU....For every comment, every share, for every single prayer...you have our gratitude and our love. We will continue to raise awareness and to fight until there is a cure for Savannah and the thousands of mito warriors.💚

I have made some changes to this meme that I shared earlier this week including fixing a typo that missed an important "0". If you would like to share it, please use this edited version. Thank you for your understanding. We all make these kinds of mistakes especially this often overwhelmed mito mamma.💚

I have made some changes to this meme that I shared earlier this week including including fixing a typo that missed an important "0". If you would like to share it, please use this edited version. Thank you for your understanding. We all make these kinds of mistakes especially this often overwhelmed mito mamma.💚

I have made some changes to this meme that I shared earlier this week including including fixing a typo that missed an important "0". If you would like to share it, please use this edited version. Thank you for your understanding. We all make these kinds of mistakes especially this often overwhelmed mito mamma.💚

Thousands of families face the reality of living with Mitochondrial Disease including many people we love and care about. We have been very blessed to share our journey with and walk along side them. They are warriors in the fight against this disease. But we need a bigger army. We need everyone to be our voice. And that's where YOU come in. Please continue to spread Mitochondrial Disease awareness beyond this week and support those affected. Strength comes in knowing that we are not alone. #KnowMito

"When you hear hoofbeats, think horses, not zebras." This phrase is told to medical students throughout their training and one that we had said to us by various doctors as they tried to determine the cause of Savannah's multitude of symptoms. In medicine the term "zebra" is used to reference a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually the best, so as not to go around diagnosing patients with all sorts of exotic illnesses that are highly unlikely. Common diseases are what doctors are taught they should expect to encounter. But many doctors seems to forget that "zebras" exist, and so getting a diagnosis and getting treatment can be more difficult for sufferers of rare or complex diseases. Mito is a mimic, able to masquerade as hundreds of other more common diseases. Often children will be misdiagnosed with one of these more likely suspects for years before a new symptom takes the initial diagnosis off the table and initiates a new hunt for answers. Other times children are handed the painful label of “undiagnosed” before a particularly astute doctor thinks to check for Mito. Many children with Mito end up stuck in a vicious cycle with their doctors busy treating all the symptoms and nobody trying to figure out the common denominator or root cause of everything. This is why Mito often flies below the radar for so long before it is diagnosed. It took us just shy of a year to diagnose Savannah and that only happened because she had a handful of sharp doctors willing to look for a unifying answer to multiple symptoms, involving multiple organ systems. Generally when someone exhibits symptoms across 3 or more organ systems or a when a "typical" disease exhibits atypical qualities...Think Mito! Think Zebras!! #KnowMito

There's a beautiful saying I've seen many times on social media by parents whose children are battling life threatening conditions such as Mitochondrial Disease. "Some people never meet their hero. I gave birth to mine." What makes this statement so profound is the beautiful truth in it. I can not imagine my life without this Savannah which is why I fight so hard to keep her. If Savannah has been a hero to you I ask that you help us share her story. You can invite your Facebook friends to "Like" our Saving Savannah page--just click on the link over to the right that says "Invite Friends", select some friends, and click "Invite." Want to take it even further? Lace up your sneakers and join our Saving Savannah Superhero Squad as we walk on October 17th in Charlotte and November 18th in Estero, Florida.#SavingSavannah #MitoAwareness http://tinyurl.com/JoinSavingSavannahCharlotte http://tinyurl.com/JoinSavingSavannahFlorida

1 in every 200 healthy humans harbors a pathogenic mutation that could develop into a Mitochondrial Disease in their lifetime. For some it appears at birth. For others it develops over time. Due to a lack of physician and public awareness, Mitochondrial Disease is not often diagnosed. Only in the past 10 years, with advances in genetics and molecular biology, have we a better understanding of the complexity in mitochondrial disorders. Even so, the definitive cause (or causes) of Mitochondrial Disease continues to evolve. The list of known diseases and conditions with a mitochondrial dysfunction component is long-- and growing longer. Mitochondrial function may be the unifying theme-- the Holy Grail of medicine, perhaps-- of understanding a spectrum of diseases, conditions and why we grow old. {Sources: American Journal of Human Genetics via www.umdf.org and mitochondrialdiseases.org , www.amdf.org, www.thelillyfoundation.org, www.pubmed.gov}

I just wanted to take a moment this Mito Awareness Week to recognize the doctors, nurses and child life specialists out there who care for those with Mitochondrial Disease. This is Savannah's pediatrician a.k.a. Dr. Q. a.k.a. The Good Doctor. There is so little knowledge and understanding of Mitochondrial Disease out there that is is tough to find a doctor who won't either abandon you or think you're crazy. It takes many families years to get properly diagnosed and then to find doctors willing to take on and stand by their complicated children on once they do. Savannah was extremely lucky that she had Dr. Q going to to bat for her right from the start. We know in our hearts that she (and her big brother, Sebastian who had an extremely rare tumor) would probably not be kickin today had it not been for having good doctors like this on our team. Thank you to our team, for your care, compassion and most of all love! You have our respect and our deepest gratitude. 💚

It sets my heart soaring to see that A Mighty Girl is featuring Savannah's story today during Mitochondrial Disease Awareness week. This life changing post spread awareness for Mitochondrial Disease from Hollywood to Hungary. It will forever remind me of the power of one small idea to do big things. Since this initial adventure we've been letting Savannah choose a different female heroine to dress up as for her infusions each week. We call it "Be the Heroine" --inspired by the Nora Ephron quote "Above all, be the heroine of your life not the victim." The power wearing these costumes has had in helping Savannah cope with her chronic illness is tremendous. If you'd like to check out her various Be The Heroine adventures and learn more about Mitochondrial Disease, here are the links... http://tinyurl.com/StarbuckInfusion http://tinyurl.com/LauraRoslinInfusion http://tinyurl.com/VictoriaMorettiInfusion http://tinyurl.com/BlackWidowInfusion http://tinyurl.com/HermioneGrangerInfusion http://tinyurl.com/StandsWithAFistInfusion http://preview.tinyurl.com/CallyTyrolInfusion http://preview.tinyurl.com/RacetrackInfusion http://preview.tinyurl.com/AnnaOfArendelleInfusion http://tinyurl.com/CinderellaInfusion http://tinyurl.com/WonderWomanInfusion http://tinyurl.com/BeverlyCrusherInfusion http://tinyurl.com/DottieHinsonInfusion http://tinyurl.com/MaryPoppinsInfusion http://tinyurl.com/ElphabaInfusion P.S. We use A Mighty Girl's awesome costume list as a great resource for costume ideas!

Our son Sebastian had a type of tumor that occurs in one in a million people and as far as any doctor could tell us (or we could find in our research) had never occurred in another 3 year old boy in the skull and in another location (he had one on his arm also) simultaneously. I remember asking his Oncologist if there was any way Sebastian’s body could be “reprogrammed” so that he would never have another tumor recurrence. His doctor explained that there would never be a cure like that since no one would fund research for something so rare and affecting such a minuscule portion of the population. As much as it grieved me I could accept the logic. In the United States more than 50 million people suffer from diseases in which mitochondrial dysfunction is involved. Do you know a person with Parkinson’s disease, Huntington’s disease, Alzheimer’s disease, or ALS?--Then you have encountered mitochondrial dysfunction. Have you met a child with autism, Asperger’s syndrome, or epilepsy? They are affected by mitochondrial dysfunction too. How about Diabetes or autoimmune diseases such multiple sclerosis, lupus and rheumatoid arthritis? You guessed it-- mitochondrial dysfunction. Even cancer is connected. Cancer and mitochondrial diseases may be disparate disorders but what they have in common is a failure of normal cellular respiratory activity in disease-affected tissues. Hence and according to many scientists, cancer should be interpreted as a type of mitochondrial disease! The point here is that finding a cure for primary Mitochondrial Disease will have implications that go far beyond it. We cure Mito and we cure everything! #KnowMito

There was only one heroine we had in mind for this week's infusion as it literally would mean going GREEN--the color of Mito Awareness! I give you Savannah as Elphaba! Please read, share and continue to make other's aware of Mitochondrial Disease 💚#BeTheHeroine #KnowMito http://tinyurl.com/ElphabaInfusion

Each year during the Wednesday of the third week of September, as we celebrate and join together to raise awareness for Mitochondrial Disease across the globe, we remember and honor those who have lost the battle and ask that family and friends "Light a Light" in their memory. The Mito community is close knit. We encourage, cheer and love each other fiercely...especially the children. We also grieve with one another through the impossibly tough times. Our thoughts and love go out to the families who have to carry on without their warriors.💚

A person with Mitochondrial Disease is at highest risk for neurological and organ damage during and for the two weeks following an illness. Therefore even a simple flu or cold virus can have devastating effects on the patient, even death. Any illness must be treated immediately with medical interventions, like IV fluids and antibiotics. #KnowMito

Mitochondria are present in nearly every cell in our bodies. They are responsible for producing over 90% of the energy needed to sustain life. Mitochondrial Diseases result from the failure of these tiny "powerhouses." When the mitochondria fail, less and less energy is generated and cells stop performing and start to die. As this process repeats itself throughout the body whole systems begin to fail and the life of the person in whom this is happening is severely compromised and ultimately leads to death. Imagine it like trying to run a whole household on a single battery...That is Mitochondrial Disease. #KnowMito