CHARLOTTE, N.C. - With a vibrant personality and maturity beyond her years, you would never know that anything was wrong with 5-year-old Savannah Greenwalt.
"I have three kids – Sebastian, who is 8 years old, Siennah is 7 years old and Savannah is 5 years old," said Amber Greenwalt, Savannah's mother.
Amber said the story started before Savannah was born, when Savannah's older brother was diagnosed with a very rare tumor.
"I was pregnant at the time with Savannah. She was born in August of 2008 and she was fine for the first 10 weeks of her life and then she became known as failure to thrive," said Amber.
Amber said no matter how much Savannah would take in, that she just could not put on any weight.
"Different systems of her body would be affected. We would have a new mystery piece of the puzzle just trying to solve what is wrong with her," said Amber.
Over time, the symptoms progressed and Savannah's parents started to investigate – contemplating what could be wrong and why the same type of symptoms continued to come back.
"We found that mitochondrial disease kept coming up and that she could possibly have that and her lapse could keep coming back," said Amber.
After deciding to have Savannah undergo tests to determine the cause, the family received the news.
"I still remember the day and I was riding on the carousel and I go to take a picture of my kids and open up my email and there it was and it said, 'We have excellent criteria for the diagnoses of mitochondrial disease,'" said Amber, "She has complex one and complex three of mitochondrial disease."
The impact that mitochondrial disease has on Savannah is significant.
"So what mitochondrial disease is, in a nutshell, is that her body does not take in food and oxygen properly and convert it into chemical energy called ATP and so when that happens you eventually have cell injuries and eventually cell death," said Amber.
Most children who are diagnosed with mitochondrial disease do not live to see their teenage years, but Savannah's family said they will not stop until they find a cure so Savannah can get the chance to grow up.
To learn more about Savannah and her battle against mitochondrial disease, click here.
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