I am Maria. Proud mom of Vanessa. Vanessa’s story is my story because I have been by her side, lifting her up, and pushing her forward during her mito journey. Our motto is stay positive and never give up HOPE.
My daughter Vanessa Romesburg was a gifted student and an active kid who 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 21 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 attends college using her power wheelchair. She is working towards a degree in psychology in hopes of one day to be a counselor. 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 her rare form of mito in hopes of creating support and doing research for MEGDEL. #MITOmom #mitoaction