i have mitochondrial disease i thank god every night and day for letting me live god has done a lot of things for me and i just dont know how to thank him
emily is beautiful . i have lost 2 most precious and beautiful girls ..... life will never be same again.... i miss them with every breath,,,, sadly i was in third world where very veryvery less info was available... emily reminded me of my second daughter .. so much resemblence..... strangely as a kid i lived near atlanta and back then in 84 i collected charity for jerry lewis for MD... not knowing my kids one day will have rare disease of same family...... will pray for u always .
My niece has Mitochondrial disease-but her symptoms are completely different. She started having seizures at 5 mos that were uncontrollable-trying to find a reason for those they discovered the disease. She lives with epilepsy as a result and with very low muscle tone-which affects her walking and fine and gross motor skills. God bless your family and gives you strength.
We thought you would like to know Brianna Couture the girl in one of the video's on your site is critically ill in the ICU in Boston MA, her friend started a page on facebook, called Support Brianna Couture. please send your love and support
Your daughter is beautiful! I also have a beautiful daughter with Mito. She had symptoms from birth. She is now 8 years old and doing amazingly well. I wish you luck with all of your struggles because as you know it is never ending. God bless you and your family
I live in a world, like yours, struggling to keep positive. My entire close family has been stricken with the disease. Each has some symptoms alike, and others much different.
Medical care is hard to come by, and so I am stuck in limbo. I am a mystery, along with all the others who must deal with this. Doctors often put up their hands, unable to come up with any further clues, or therapies to assist with the immense pains.
Thank you for sharing, as with others we have been struggling with misdiagnosis' for years and it wasn't until I have two children that are symptomatic that we found its mito. My poor husband is the only one in the family without mito!
I have had a simular dream but was not able to put it into words. You did a beautiful job and are a beautiful girl! I have a complex 1 and have been a patient of Dr. Cohen at the Cleveland Clinic since 1999. Your poem is just perfect, just as you are perfect.! When I watch your video I see a green light over your head when you start to talk about your dream and you remind me of Christmas.
i have mitochondrial disease i thank god every night and day for letting me live god has done a lot of things for me and i just dont know how to thank him
hannahshrock724 7 months ago
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iamjenny1994 9 months ago
emily is beautiful . i have lost 2 most precious and beautiful girls ..... life will never be same again.... i miss them with every breath,,,, sadly i was in third world where very veryvery less info was available... emily reminded me of my second daughter .. so much resemblence..... strangely as a kid i lived near atlanta and back then in 84 i collected charity for jerry lewis for MD... not knowing my kids one day will have rare disease of same family...... will pray for u always .
lotusfaisal 1 year ago
AMAZING!
gizmo357 1 year ago
What a beautiful girl, and a beautiful family!
Stacey31233 1 year ago
god Bless her she is Beautiful and i no ur faqmily and u Emily will be Strong Melissa
TheMelmel1 1 year ago
My niece has Mitochondrial disease-but her symptoms are completely different. She started having seizures at 5 mos that were uncontrollable-trying to find a reason for those they discovered the disease. She lives with epilepsy as a result and with very low muscle tone-which affects her walking and fine and gross motor skills. God bless your family and gives you strength.
mnat28 1 year ago
My friend Maggie has Mito and there isn't a day that goes by that I don't have my UMDF braclet on.
wsdrummer06 2 years ago
Hi Emily,
I have watched your video and everytime I cry wondering why such a beautiful girl has to be like this. I will pray to GOD for you.
emilyhope101 2 years ago
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maryswinn 2 years ago
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maryswinn 2 years ago
We thought you would like to know Brianna Couture the girl in one of the video's on your site is critically ill in the ICU in Boston MA, her friend started a page on facebook, called Support Brianna Couture. please send your love and support
prajnajewelry 2 years ago
Your daughter is beautiful! I also have a beautiful daughter with Mito. She had symptoms from birth. She is now 8 years old and doing amazingly well. I wish you luck with all of your struggles because as you know it is never ending. God bless you and your family
Bgdazed 2 years ago
I live in a world, like yours, struggling to keep positive. My entire close family has been stricken with the disease. Each has some symptoms alike, and others much different.
Medical care is hard to come by, and so I am stuck in limbo. I am a mystery, along with all the others who must deal with this. Doctors often put up their hands, unable to come up with any further clues, or therapies to assist with the immense pains.
Emily, keep reaching for your dreams!
TheBlackberrybeat13 2 years ago
Thank you for sharing, as with others we have been struggling with misdiagnosis' for years and it wasn't until I have two children that are symptomatic that we found its mito. My poor husband is the only one in the family without mito!
SalTaylor01 3 years ago
I hope for the best outcome for this situation
robkim55 3 years ago
Dear Emily,
I have had a simular dream but was not able to put it into words. You did a beautiful job and are a beautiful girl! I have a complex 1 and have been a patient of Dr. Cohen at the Cleveland Clinic since 1999. Your poem is just perfect, just as you are perfect.! When I watch your video I see a green light over your head when you start to talk about your dream and you remind me of Christmas.
Thank you Emily for sharing.
Love and Laughs,
Suzanne Arends from Nunica, Michigan
SuzanneArends 3 years ago
thanks for informing the public with your stories
raminshaman 3 years ago