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Jakeb Henry Spreads Awareness for Mitochondrial Disease

Jakeb at Walk on Water

Did you know a student in our Mt. Vernon family is fighting a challenging disease called Mitochondrial Disease?  He is stepping out of his quiet comfort zone to educate the community on his disease, while his peers fundraised to provide him with an experience of a lifetime.  The 8th grade students, the Mt. Vernon Middle School and High School staff, and friends/family members donated over $1,700 for Jakeb’s animal adventures!  Soon he will swim with the dolphins at the Indianapolis Zoo and paint with animals.  The remaining money will be used to buy him books and give his family an annual membership to the Indiana State Museum, Eiteljorg or Indianapolis Zoo.


Jakeb Henry is an eighth grade middle school student who loves to learn, and would give anything to be able to stay at school all day.  Mitochondrial Disease causes patients to struggle with energy deficiency and lack of muscle strength, leaving them unable to do daily activities and basic actions. Jakeb is receiving extra IV fluids help him manage his pain. As a result, he has been able to come to school more throughout the week and is more frequently able to stay throughout the entire school day.


From April 2 to 11, the Mt. Vernon Middle School Eighth Grade Academy organized a fundraiser for Jakeb to give him an experience to look forward to. The students raised more than enough money to send him and his family to the Indianapolis Zoo to swim with the Students Raising Money for Jakebdolphins and paint with animals. He has an immense love for animals and it is something he’s been wanting to do. His classmates wanted to provide an animal adventure of a lifetime.  The remaining funds raised will be used to purchase books for him, as he loves reading historical texts. Jakeb is going to the zoo to participate in these experiences with his family and a Mt. Vernon Middle School 8th grade science teacher, Stacy Griner.


Jakeb wanted to bring attention to various genetic diseases that kids all over the world are struggling with through this fundraiser. He really wanted the focus to be on the fact that kids are struggling daily with issues that people may not know about. Some of the diseases the fundraiser highlighted were ALS, Cerebral Palsy, Cystic Fibrosis, Down's Syndrome, Sickle Cell Disease, and Huntington’s Disease. After learning about them, the homerooms had some discussions with the students about how these kids are impacted by their disease. Some students had personal connections to some of the diseases highlighted.


When Jakeb was asked why he wanted to do this and what it means to him, he stated,

“The main point of the fundraiser is to make Mitochondria Disease to known to many, because for those who have it and don't realize he/she has it could be a big problem when it does mature. For me it took 1.5 years until I knew I had this disease, not due to the symptoms, but due to the very slight twist in my spine which I’ll have to have surgery on when I’m older. One and a half years is a long time for preparations and to just figure what it was. The main reason I want to spread awareness for mitochondrial disease is to make what happened to me never happen again to someone else.  I want to make doctors know the symptoms and the signs when a person has this disease and spread the news of this disease. Hopefully it will help us 1/2000 who have it have a chance of getting a cure in our lifetime and cure us from this miserable disease. I want to make the world know this disease is a real thing and people should be aware of its presence.”

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