‘Our daughter was diagnosed with this disease right after she was born. Jennette suffers from a rare form of the disease – even small joint fissures turn into callus looking like tumor. It restrains hands and feet movements and causes pain. Our family used to live in Turkmenistan, Turkmenian doctors recognized their powerlessness at once and sent us to Moscow where our struggle for the daughter’s health and life got started. A year ago we moved to Moscow to be closer to the doctors. Another fissure in the elbow joint resulted in inability of the right hand to bend. Surgical interventions had been contraindicated but we had to choose between shoulder joint atrophy and risk. We took a risk, but good results changed to a relapse. Now Jennette cannot bend her right hand because of a large tumor. Her hip joints are malformed, the right leg is shorter than the left one. Jennette is being moved in a wheelchair but she is not giving up. We have a tight schedule: school, swimming pool, English studies, sport dances in a wheelchair, but even Moscow doctors cannot cure the fast growing tumors. One of American children’s hospitals is ready to help us but we don’t have money to pay for the treatment,’ says Svetlana Bazarova, the girl’s mother, Moscow, Russia.

A Very Rare Disease

2012-08-08