Happily Ever After for Kiana!
Organized by: Katayoun Soleimani
My name is Kiana Rose. I was sent to my parents as a Christmas gift three years ago. At first, life was great and everything looked fine. But after a few months, I started to have seizures and little by little other signs came to the surface. After several blood tests, MRI, EEG and hospitalizations, the doctors came up with a very big name: Pyruvate Carboxylase Deficiency, or PC, which is a genetic mitochondrial disorder. Basically the batteries of my body do not produce enough energy, which causes damage to my brain and organs. I have very low muscle tone and can not sit or walk yet, but I am working very hard at it with the help of my therapists. Even though the prognosis is not the best, I am hoping for the best! That’s why I am a very happy baby and I know how to melt people’s hearts with my beautiful smile and mesmerizing black eyes. My mom is doing everything in her power to make my life extraordinary. She had to quit her job and stay home in order to take care of me. Mitochondrial disorder is not that rare and is claiming more children every year than cancer. However, the general public is not aware of it unless their loved ones are affected. I take about 30 doses of medications per day. In order to give me a better chance to survive Drs need to find the best medications and the right dosage. Unfortunately these tests are not covered by insurance and cost minimum $50,000. That's why l need your help to get a better chance to win this fight! I would like to thank you, in advance, for your generous contribution. With love, Kiana Rose