Vova Peskov, 15 years old, opsoclonus-myoclonus paraneoplastic syndrome, He needs to be examined at the National Pediatric Myoclonus Center (Springfield, Illinois USA).
Vova Peskov, 15 years old, opsoclonus-myoclonus paraneoplastic syndrome, He needs to be examined at the National Pediatric Myoclonus Center (Springfield, Illinois USA).

At the age of one, Vova was diagnosed with a malignant tumor of posterior mediastinum, a neuroblastoma. Our son had surgery, after which he began behaving strangely. He would constantly fall down, his legs would wobble, and his eyes would roll involuntarily. The doctors concluded that he has a rare disease with complications from the tumor. In Russia, the only place to treat it is the Republican Children’s ClinicalHospital in Moscow. We went there and Vova was prescribed hormonal medication. In the beginning, the medicine helped extremely well. There was no sign of the disease. However, as soon as the doctors lowered the dose of the hormones – because taking the medicine for too long leads to grave side effects, – all of his symptoms returned and our son became indifferent, stayed in bed and stopped talking. This happened several times. Last year, Vova started taking an American medicine, synacthen Depot, which is not registered in Russia. At first it worked well, but then it started all over again, just like before. The doctors are not able to offer a different treatment plan. They have referred us to the USA for a consultation at the MyoclonusCenter. We are hoping that Vova can be examined there and that doctors will find the right treatment and medication for him. Please, help us, we have three children and cannot pay for this much-needed trip ourselves. Alexander Peskov, Moscow.

To save four-year-old Vova Peskov $11,500 is needed

It started all over again, just like before

2013-01-17