7yearold Ellie McGinn Teaches Johns Hopkins Medical Students About Mitochondrial Disease
Ellie McGinn has a rare genetic disease that affects the powerhouses of her cells, called mitochondria. As part of a class on mitochondrial disorders, Ellie and her father shared their experiences with the disease with Johns Hopkins medical students. Ellie is being treated by doctors at the Kennedy Krieger Institute and Johns Hopkins' McKusick-Nathans Institute for Genetic Medicine (IGM). Learn more about the IGM here: http://www.hopkinsmedicine.org/geneticmedicine/. Or see more of Ellie's story at http://acureforellie.org/. 0:00.8 When someone gives a lesson at Johns Hopkins, students listen. 0:04.9 But when that someone is seven years old, 0:07.0 the audience moves to the edge of their seats. 0:09.9 Meet Ellie McGinn, 0:11.1 an energetic girl with a rare genetic disorder, known as LBSL. 0:15.6 My feet were hurting a lot and I was starting to fall. 0:19.8 Today, she's visiting Johns Hopkins to help students better 0:22.8 understand her condition which affects the mitochondria in her 0:26.1 cells, especially in her brain and spinal chord. 0:29.8 It manifests in pain in the feet and in low balance, 0:33.6 essentially a brain disease where an important component of 0:36.6 the brain isn't produced due to her condition. 0:40.0 It's so rare, there are less than 100 known cases. 0:43.5 Making it difficult to diagnose and treat. 0:45.9 The biggest hurdle really is in order to treat a disease you 0:48.9 have to have a measurable goal for outcome. 0:51.0 And in really rare diseases it's very difficult to find out what 0:53.8 that measurable goal is. 0:55.1 That's why Ellie and 0:55.9 her father do all they can to help doctors and 0:58.2 students learn how to treat children with this condition. 1:01.1 The next round of America's top 1:02.4 doctors from the top institution are hearing about this. 1:04.9 They're hearing about it in an active way and 1:06.4 they're getting to interact with a child who's actually got 1:09.0 the disease. 1:09.7 What do you think? What's your favorite food? 1:11.8 Skittles. 1:13.2 [LAUGH] I want the students 1:15.5 to remember this experience, remember Ellie, 1:17.5 remember her family and take them into the future 1:19.5 Whether it's what they choose 1:21.0 to pursue or just seeing a patient and 1:22.9 recognizing I should be thinking a little bit deeper. 1:25.6 Even though there is no known cure, Ellie continues 1:29.3 to inspire the future of medicine here at Johns Hopkins 1:33.1 with the hope that one day, a cure will be found for 1:36.6 children like her all over the world. 1:39.3 MUSIC