Twelve Year Old Eugene may have Hajdu-Cheney Syndrome. He needs a comprehensive examination and medical treatment for his condition.
At age four, Gene fell 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 Gene 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. Gene 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 Gene and to find the right treatment for him. Please help us!
Olga Danilova, Krasnodar region.
To Help Twelve-Year-Old Eugene $6,750 is Needed.
Head of the Department of Congenital Abnormalities, Global Medical System Clinic (GMS Clinic, Moscow), Natalia Belova: "Eugene’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 Eugene’s treatment is $227,029. We are happy to report that the Rusfond children's charity in Moscow has raised the entire amount needed. Eugene is expected at the hospital in September. However, an additional $6,750 is required for his and his mother’s accommodations, food, local transportation, and other associated expenses for the duration of their stay in the USA.
If you want to help Eugene please don't let the cost stop you. You can contribute to Russian American Children's Foundation using a Credit Card, PayPal, or by sending a check made payable to RACF and mailing it to Russian American Children's Foundation, 420 Lexington Avenue, Suite 300, New York, NY 10170. Thank you! All donations in excess of what is needed for Eugene will help other children in need of ear surgery. RACF USA
November 18, 2013
Eugene Danilov returned home after being treated at The Children's Hospital of Philadelphia, PA. 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 Gene 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.
Eugene's mother Olga is grateful to all those who helped them get support.