15 November 2013
?My baby is unique? all parents say or think so, but Aynazik?s parents have a full right to this. Their daughter is the only one in the entire Kyrgyzstan with imperfect osteogenesis. No patients means no doctors capable of how to treat the disease.
When Aynazik was diagnosed with imperfect osteogenesis (increased fragility of bones), the family rushed to the Internet that provides answers to any kind of questions. But the disease is rare not only in
Kyrgyzstan, but in Russia and other neighboring countries as well. While the parents were looking for a specialist, Aynazik had 16 bone fractures and several surgeries.
Luckily, the search for help for their daughter is over ? the Russian Association of Patients with Imperfect Osteogenesis learnt about Aynazik, they contacted the parents and introduced them to Nataliya Belova, the Division Director in European Medical Center (Moscow), a Doctor with a many-years experience in helping ?fragile? children. The medication Pamidronate Medak can help to reinforce the bones and to avoid bone fractures.
The examination and first course of treatment is expected in January. The cost of one year of treatment with Pamidronate is 10,000.00 dollars. Aynazik will have no chance to come to Moscow and undergo the treatment without your help. Please help!