Rasmussen syndrome is a rare disease. It looks like a curse in folk beliefs about the werewolf. But the terrible “changes” do not start to come over the 5-year-old Yaroslava Chudilova at full moon. The girl goes through the bouts of acute pain 10-13 times a day. As a rule, she can feel a seizure is about to strike.
“It’s close,” Yaroslava whispers to her mom. The girl’s eyes turn even more lackluster and panic-stricken. She takes a deep breath before she passes out for a few minutes. That world she is plunged into is filled with pain. There is nothing but pain in there, says the girl. The pain makes her right arm and leg stretch to the limit. Her head jerks backward and her body arches as a wave of pain sweeps the girl into unconsciousness. The pain is hardly bearable. Yaroslava recently badly injured her chin while suffering one of the fits.
The disease first struck last year. On that fateful morning her mother found Yaroslava lying unconscious on the rumpled bed sheets. The girl was rushed to hospital by an ambulance. The following week Yaroslava spent in a coma. Doctors eventually managed to save her life. But the disease never faded away. It tends to strike back with growing intensity. The left half of Yaroslava’s brain is affected with what the doctors call “progressive atrophy of a hemisphere’s cerebral cortex.” Yaroslava has to take antispasmodic drugs on a regular basis to stay alive. The drugs are costly. Her parents do not have enough money to pay for the drugs. And their daughter has to live through yet another agony more frequently than before. Her body is slowly but surely being wasted away by deadly disease. Doctors at the Moscow Research Center of Pediatric Studies and Infantile Surgery are now doing their best trying to help the girl last a little longer. The girl is on an immunoglobulin drip several times a day. But medicine is also pretty expensive normally in short supply. It is not even enough to complete a course of therapy.
Doctors are unanimous in their verdict: Yaroslava needs to be operated urgently. However, Russia has medical specialists who can help the girl survive. German doctors in a clinic for treatment of epileptic patients are reported to be able to perform an operation and carry out following treatment for complete recovery. But the medical bills will amount to nearly 50,000 euros. The Germans already sent an invitation to the girl, all the paperwork is in order.
The Chudilovs have only one breadwinner in the family, it’s the father of Yaroslava, Sergei.
He is a construction worker. Her mom takes care of the ailing girl all the time. There is no way the parents can conjure up the money on their own.
“We never thought that our daughter was fated to suffer so much. Just a few years ago she would go to her kindergarten, she would dance and sing for us. Overall, she was a very smart girl,” says Ira, Yaroslava’s mother, in between the sobs.
Despite all the spasms of excruciating pain, Yaroslava seems to remain smart. It is really hard to see the condition she is in now. The remains of her strength have been running thinner day in, day out. She can barely control her body. An unknown force makes the fingers on her right hand twist continually. The right side of her face is bent out of shape. The girl can hardly walk these days. You can see the effort she makes while trying to utter a few words. She seems to be unable to smile any more. When she wants to please her mom and stretch her lips sometimes. Her eyes look two bottomless wells filled with pain right to the brim. The eyes can only reflect the days that may be numbered if no help is on the way.
Translated by Guerman Grachev