Program Booklet
Thank you Legacy Guardian Peggy Davis.
February 2020
"Kimberly is 33 years old and has idiopathic NBIA. She has been tested for every form of NBIA, had whole exome done multiple times, along with mitochondrial genetic testing and other tests to try and find the gene causing her disease. She may be the only one in the world with her form of NBIA - making her one of the rarest of the rare!
February 2020
"My sweet handsome son Matias was diagnosed at age 2 after he regressed and wasn’t able to crawl walk and talk it took a lot of blood test and genetic testing to finally get the answers of what was going on with our son! He is now 9 1/2 years old and over time now has a feeding tube as well as a tracheostomy and scoliosis!
February 2020
"When Julieta arrived in Montevideo, Uruguay on September 24, 2001; I was 23 years old. Her father and I had been together for five years and she made us so happy! When Julieta was 15 months old, we started to notice unexplainable changes in her.
February 2020
"Juliana is 17 now. She began to have uncontrollable body movements around toddlerhood. We went to many doctors, hospitals, & widely respected movement specialist. Along the way she was diagnosed with Asperger’s & Bipolar. Every single doctor said that she did not fit any movement disorder they had seen.
