Mariah is a soon-to-be twenty-one year old that has OPA1 (http://ghr.nlm.nih.gov/gene/OPA1). She also has ADOA-plus syndrome, as mentioned on this website. She is blind and has muscular weakness, balance issues, and migraines. Mariah was born ‘normal’. I soon noticed issues, especially with her eyes. Her vision slowly degraded. I can thank God that she had the opportunity to see the moon, the sun, stars and grass – she knows her favorite color is yellow. She used to walk, and run, and play tee-ball – that all was slowly taken from her. No single doctor could pinpoint the disorder, and treated everything separately. When she was in 9th grade, a doctor in Atlanta finally diagnosed her. She lives with my husband and myself. We work opposite days just to make sure someone is home with her and she can have an enjoyable day. She cannot take care of herself without assistance, such as ensuring her safety in the bathroom, getting dressed, and getting food on her fork and spoon. There are days where she feels great, and days where she wants to stay in bed. Once a week, she works with a trainer at Fitness Forum in Florence, SC, to try to combat the degradation of her muscles. One day my running coach said to Mariah that she would love to race with her. At first, Mariah was hesitant. But over the next week, she warmed up to the idea. Finding out that she could get a custom chair made it even more exciting. I spoke to her of training with us, and even running in a half marathon – she knows the excitement and says she’s ready for a new activity and challenge. Mariah would like an Adaptive Star Racer Conversion for her chair. They can make it ‘her chair’, even with her beloved cup holder next to her, and with wheels that can be changed out for ones she can push herself. This chair will be made to her specifications to keep her comfortable and secure during races, and can be used with a bicycle as well (can you say Triathalon???) Thank you for time and I can’t wait to see what’s around the corner!