Kiana Ashrafy
My name is Kiana Rose Ashrafy. I was sent to my parents as a Christmas gift two 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: Degenerative Mitochondrial deficiency, which is a metabolic 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. I do not talk but try to communicate by making different noises and if they don’t get it I kick, which always works very well!
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 parents are doing everything in their power for me. My mom had to quit her job and stay home in order to take care of me and my dad has missed a lot of days at work. My grandmother is also always there to make me laugh! 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.
My parents and I are determined to help to find a cure and make sure no other family has to go through this heart breaking battle by raising awareness and funds for medical research. The genetic experiments are very promising but require a lot of funds to become an actual treatment approved by the FDA. The mitochondrial disorder is also known to be the contributing factor and maybe the cause of other diseases like some spectrums of Autism, Parkinson disease, Multiple Sclerosis and many more.
Please help me to live a HAPPY, LONG LIFE and also take part in finding a cure and save other kids’ lives. All donations are directly made to the “CHOC Foundation” Metabolic Department of CHOC, which is a non-profit organization and donations are tax deductible. The laboratory equipment needed will not only benefit children with mitochondrial deficiency, but also children with other metabolic disorders.
I would like to thank you, in advance, for your generous contribution.
Live, love and give. Kiana
