Anna Vovkodav is 12 years old and she suffers from Rett Syndrome, rare genetic neuropathology occurring mainly in girls and causing severe physical and mental disabilities.
Till the age of 1, Anna was developing with a moderate subnormality, and her parents didn't realize something was wrong. However, at 1.5 y.o, their daughter started to forget how to grab a toy, use a spoon, or say a word. Later on, stereotypic hand movements and epilepsy appeared.
For eleven years the Volkodav family were living with a wrong diagnosis. None of the nootropics and stimulants worked for Anna and she was getting worse.
Finally, the genetic testing proved the mutation in the MECP2 gene. By this point, Anna has already had multiple developmental disorders, thoracolumbar scoliosis of the 4th degree, flat-valgus feet, contracture of the right hand, gastrointestinal tract disturbances, and seizures. Now she can't sit or walk, can't grab an object and hold it, can't talk.
Despite all the hardships, this little princess is a very cheerful, emotional, kind, patient, and infinitely loving girl. She can tell about all her sorrows and joys with her eyes, look, emotions, intonations, as well as her infectious laughter. Anna enjoys watching cartoons and being read.
With timely assistance and the right approach to treatment, girls with #RettSyndrome
continue developing; they can learn how to walk, use their hands, and even socialize.
Anna is scheduled for a $10,000 surgery this September involving transpedicular fixation and posterior spinal fusion. However, nearly $3,500 are still missing, not including further mandatory rehabilitation.
Anna is a participant in the Unbiased Genetic Disease Program at BFS. With your help, we believe that Anna's life can still gain new bright colors