If Olga doesn't gather funds needed for the treatment, she may have to lose half of her brain. How is it possible? Please, read on. In this story nothing is ordinary.
The heroine is out of the ordinary. On the photos from before she was 7 years old, you can see a shyly smiling dark-haired girl. She is playing the piano. She dances. She skis, she rides a bike. Always on the move – climbing, playing volleyball, soccer. An uncommonly gifted child, marvel those who meet her. She has so many talents – she has a great future ahead. "Up to the seventh year of age my daughter was a completely healthy, beautifully growing, remarkably dexterous child." – writes Olga's mother. Then came the year 2008, which changed everything.
The first seizure comes on a summer morning. A typical epilepsy seizure – spasms, trismus. It lasts for about three minutes. Sometimes it just happens – reassure the physicians. But the seizures continue to happen. Olga, befuddled, cuddles to her parents saying that her head is spinning. Symptomatic treatment, medications, subsequent seizures, subsequent examinations. Myoclonic twitches, which she's not able to subdue. She loses control of her right hand – overnight. There's uncertainty about what's happening.
The symptoms of the disorder are uncommon. The diagnosis is made in spring of 2010.
Olga is diagnosed with the Rasmussen syndrome. There are only about 200 children in the world diagnosed with this disease. “Rasmussen's syndrome appears to be an autoimmune process that causes one hemisphere of the brain to become inflamed and deteriorate”. It isn't known what triggers the autoimmune process – it may be a viral or bacterial infection. The treatment for Rasmussen’s syndrome, aimed at suppressing the process, is considerably experimental. It is difficult or impossible to control it with medication. Often, the best treatment option is surgery, including hemispherectomy, since it is one hemisphere of the brain that is affected. The symptoms are seizures, myoclonic twitches, hemiparesis, and sensory disorders. Often, subsequently, there's a regress of cognitive functions. These are irreversible.
In Olga's case the process of the disease is quite slow. The benign examination results in 2012 gave hope that the worst part of the disease is over. Sadly, it wasn't the disease's turning point – a few months later Olga lost the motor skills of her right hand. One day she wrote down notes in her diary; the next day she couldn't control her hand anymore. Currently her hand is clenched, and she cannot straighten her fingers. She suffers from myoclonus in the right half of the face. The disease seems to be progressing.
A surgery was suggested – a hemispherectomy. Hemispherectomy is a very rare surgical procedure, where one cerebral hemisphere (half of the brain) is removed or disabled. However, because it is the left hemisphere of Olga's brain which is affected by the disease, the surgery carries a risk of significant impairment of her functioning. The left hemisphere is responsible for the speech, logical and analytical thinking. For memory. If it is disabled – there is a great risk that Olga may lose all this.
The only therapy which bodes well for the improvement of Olga's health is the stem cell therapy. Any other intervention may at best slow the process down or decrease the number of seizures for a period of time. The stem cell therapy, according to the doctors, will bring noticeable and permanent improvement of Olga's condition. Olga will probably be the first Rasmussen syndrome patient in Poland treated with stem cells, one of the first in the world.
Olga has learned to make good use of her left hand. Although she doesn't play the piano anymore, nor does she climb, but she is an avid painter. Her paintings are remarkable. Her speech is slow, but she uses full sentences with correct grammar, and she keeps amazing the doctors with her abilities. She continues being out of the ordinary.
If we don't help her, the extraordinariness may vanish.
The date of the treatment is 18th of May.
There isn't much time left.
Please, help to save Olga.