Vanessa, Age 19

3-MGA --3-Methylglutaconic acidemia 

Vanessa was a gifted student and an active kid who had played soccer, took gymnastics lessons, and was a cheerleader. She became a teenager and she started to play the flute and do typical teenager things until issues that were being treated as psychiatric started to affect her physically. Her anxiety and tics started to affect her school work and her ability to live daily life independently. That is when the quest to find out what was wrong began. Within months physical symptoms kept coming on. She had gait and balance issues and had trouble writing and started to stutter. She lost the use of her left arm from dystonia. The quest for answers led to her being diagnosed with a type of Mitochondrial Disease called MEGDEL at the age of 14. Vanessa is now 19 and has many health issues caused by her disease. She is in a wheelchair outside of her home and is under the care of five specialists. She has worked to raise awareness of mito and has tried to help the community by participating in three mito clinical trials. Today a focus is finding others with this rare form of mito in hopes of creating support and doing research for MEGDEL.
 
https://www.facebook.com/Megdel3mga3-Methyl-Glutaconic-Aciduria-1886578088309739/
 
Thank you.
Maria
Lawrenceville, Georgia
mariaromesburg25@comcast.net
 

---