Ellie's Story

Ellie is one of many children who suffer from a disease called mitochondrial disease. Ellie's case is unique, as her version of the disease (Leigh's syndrome) is especially aggressive and destructive.

Ellie, a twin, appeared healthy at birth. She and her brother Jimmy were in sync until about 6 months of age when Ellie's development started to fall behind that of her twins. That began the journey of many doctor visits and lost nights of sleep for Ellie's parents, Matt and Kris. At age 2, Ellie was confirmed to have mitochondrial disease. With no known cure, her prognosis was bleak.

Ellie is now 9. About the time of her diagnosis, Ellie was able to walk and to talk. Not any more. She has lost her ability to walk, to eat, to speak, and, in the latest, very lengthy hospital stay, to breathe on her own and to regulate her autonomic system (heart rate, blood pressure, and body temperature)...simply put, her body is failing her. Her mind is fine. Ellie knows what is happening to her. Ellie's spirit is a true testament to her amazing character. She is always smiling...always laughing...and quick to give her reassuring ‘thumbs up'.

Mitochondrial disease is terribly complex. It's a genetic disorder that impairs the workings of the mitochondria, parts of cells that create the energy your body needs to function. Doctor's have much to learn about mito. What they do know is that ElIie's version of the disease (Leigh's) is the worst of the worst. Everyday is a struggle for survival. We have an opportunity to make a difference. It is our mission to raise awareness and funds. Ellie's life, although predicted to be short, is sure to touch you. She is a rare person...you will be inspired to come to know her.

This 5K was started in a desperate attempt to help. The response from friends and our community has been nothing short of incredible. But still, we need to spread this message beyond Powell, beyond Ohio...it's time. We are especially excited about the race this year. We have formed our own charity, Race for Ellie Foundation, and we have partnered with The Ohio State University to support research that has the potential for a cure. With Ellie's participation, we have a shot at a cure! The research, although not without its risk, is riddled with hope...not just for Ellie, but for all touched by this horrible disease.

Please join our journey toward a cure.

To learn about Ellie's journey and keep updated on her condition, sign into www.caringbridge.org/visit/ellie


Home Race for Ellie Foundation Event Information Sponsors 2011 Overall Results 2011 Age Group Results Pledge Sheet Directions Ellie's Story Register Donate Teams Send to a Friend Contact Us	Ellie's Story Ellie is one of many children who suffer from a disease called mitochondrial disease. Ellie's case is unique, as her version of the disease (Leigh's syndrome) is especially aggressive and destructive. Ellie, a twin, appeared healthy at birth. She and her brother Jimmy were in sync until about 6 months of age when Ellie's development started to fall behind that of her twins. That began the journey of many doctor visits and lost nights of sleep for Ellie's parents, Matt and Kris. At age 2, Ellie was confirmed to have mitochondrial disease. With no known cure, her prognosis was bleak. Ellie is now 9. About the time of her diagnosis, Ellie was able to walk and to talk. Not any more. She has lost her ability to walk, to eat, to speak, and, in the latest, very lengthy hospital stay, to breathe on her own and to regulate her autonomic system (heart rate, blood pressure, and body temperature)...simply put, her body is failing her. Her mind is fine. Ellie knows what is happening to her. Ellie's spirit is a true testament to her amazing character. She is always smiling...always laughing...and quick to give her reassuring ‘thumbs up'. Mitochondrial disease is terribly complex. It's a genetic disorder that impairs the workings of the mitochondria, parts of cells that create the energy your body needs to function. Doctor's have much to learn about mito. What they do know is that ElIie's version of the disease (Leigh's) is the worst of the worst. Everyday is a struggle for survival. We have an opportunity to make a difference. It is our mission to raise awareness and funds. Ellie's life, although predicted to be short, is sure to touch you. She is a rare person...you will be inspired to come to know her. This 5K was started in a desperate attempt to help. The response from friends and our community has been nothing short of incredible. But still, we need to spread this message beyond Powell, beyond Ohio...it's time. We are especially excited about the race this year. We have formed our own charity, Race for Ellie Foundation, and we have partnered with The Ohio State University to support research that has the potential for a cure. With Ellie's participation, we have a shot at a cure! The research, although not without its risk, is riddled with hope...not just for Ellie, but for all touched by this horrible disease. Please join our journey toward a cure. To learn about Ellie's journey and keep updated on her condition, sign into www.caringbridge.org/visit/ellie