At age four, Zhenyafell from a slide and dislocated his hip. Since then he has not been able to walk. At the time, x-rays showed that he already had fractures, but they had fused together. Now fractures occur more frequently and when they fuse together they form blisters resembling tumors. No one has been able to figure out the cause of the fractures and fissures that occur even when Zhenya is sitting quietly. Fistulas have formed in his muscle tissue. Doctors in Krasnodar, St. Petersburg and Moscow gave different diagnoses: arthritis, osteolysis (bone softening), osteogenesis ("glass" bones), but then excluded them. Zhenya suffered through anesthesia thirteen times, his legs are deformed, one is shorter than the other, he cannot walk. American specialists became familiar with our case and began to suspect a rare genetic disease. They’re ready to examine our son. It costs a lot of money, which our family doesn’t have. But it’s important for us to understand what is wrong with Zhenyaand to find the right treatment for him. Please help us! Olga Danilova, Krasnodar region.
To save eight-year-old Zhenya Danilov $6,750 is needed.
2013-05-13
Head of the Department of Congenital Abnormalities, Global Medical System Clinic (GMS Clinic, Moscow), Natalia Belova: "Zhenya’s condition is serious, he cannot walk because of the pain. We suspect an extremely rare genetic syndrome called Hajdu-Cheney. He can get an accurate diagnosis and relief from this condition at the Children's Hospital of Philadelphia." The cost of Zhenya’s treatment is $227,029. We are happy to report that Rusfond has raised the entire amount needed. Zhenya is expected at the hospital in September. However, an additional $6,750 is required for him and his mother’s accommodations, food, local transportation, and other associated expenses for the duration of their stay in the USA. Dear friends! If you want to help Zhenya please don't let the cost stop you. Your donation in any amount will be gratefully accepted. You can contribute to Rusfond USA using PayPal or by sending a check made payable to “Rusfond USA” and mailing it to Rusfond USA, 420 Lexington Avenue, Suite 300, New York, NY 10170. Thank you! Rusfond USA
Evgeni Danilov returned home after being treated at The Children's Hospital of Philadelphia (USA). The boy had genetic testing, which ruled out both Hajdu-Cheney syndrome and osteogenesis imperfecta. However, using a special surgically implanted plate, doctors were able to correct the deformity in his right leg. The operation was successful and Zhenya can now walk. The results of further genetic testing will be known in three to four months. American specialists hope that they can establish an accurate diagnosis and propose a detailed plan for the boy's further treatment.
Zhenya's mother Olga is grateful to all those who helped them get support.
An American Hospital Will Admit Zhenya Danilov in September
On May 13th here on this site, we told the story of Zhenya Danilov, an 8-years-old boy from Krasnodar region. Zhenya suffers from possible Hajdu-Cheney Syndrome. He needs a comprehensive examination and medical treatment at Children's Hospital of Philadelphia. The cost of the treatment is $227,029. But the Danilov family doesn’t have anywhere near this amount of money. We are happy to announce that Rusfond (the Russian Aid Foundation) has stepped in to help and all the necessary funds have been raised. The Danilov family will also need an additional $6,750 in support during their stay in the US. Individual donors from Russia, the US, Germany, Canada and other countries have contributed to cover Zhenya and his mother’s accomodations, local transportation, food and other associated expenses in America. Zhenya will be admitted to the hospital on September 16th. Zhenya’s family thanks everyone who has helped. Dear friends, please accept our gratitude as well.