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Savoskina Sophia, 11 months old

Date of birth: 15 October 2016.
Penza.

Diagnosis: Ehlers-Danlos Syndrome. Sophia has several congenital developmental defects. Fortunately, all of them are curable. We beg you to help in paying for the medical procedure of setting the hip-bone without carrying out an operation; it should be performed as soon as possible not to miss the chance. Such a procedure cannot be performed in this country; to carry it out in Germany EUR 15 004 are to be raised. We beg you to help.
6 September 2017

Nobody could imagine that Sonya would have serious problems with health. Her parents used to be sportsmen, and always lead a healthy style of life; no complications of pregnancy were observed. All of a sudden, the girl appeared to have numerous defects: dislocation of hip joints, dullness of hearing, joints hyperelasticity, cleft palate. And this list is by no means complete. The parents were hinted vaguely that should better give up the child not to spoil their life. But they were fully intended not to do so, as it would mean to let their daughter die. Obviously, she would not have survived unless being specially cared and treated.

Sophia appeared to be a unique child. Later she was diagnosed with Ehler-Danlos syndrome, a rare genetical disorder, of which hyperelasticity of the joints and the connective tissue are most typical. These factors have triggered numerous defects, which Sophia suffers from. The disease is not terminal; patients of this kind may live a long life, do their job and have a family. The only condition is, in order to lead a normal life, Sophia will have to support her health throughout her life with the help of special physical exercises and drugs. Moreover, it goes without saying that Sophia will have no chance to have a happy future unless all her congenital defects are cured now.

Strange as it may seem, the disease, which have led to the numerous defects, may help to cope with them to some extent. Thus, for example, due to congenital elasticity of the tissues, the dislocated hip-bone can be put into the joints again without a surgical operation, but with the help of physical training and applying a retentive bandage till the joints are fixed in the right position. That would be an ideal variant, since it enables to avoid the consequences of anaesthesia, which is to be given to the girl, and a difficult period of rehabilitation. The problem is such a method is applied only in Germany; their colleagues in this country would wait till Sophia is grown up and relies on her own feet despite the pain — only then the operation on pathological dislocations could be performed. No guarantees are given, however, that the doctors would cope with blood loss while operating the patient with such a diagnosis.

The difference in the approaches does not show negligence of the doctors in this country; they simply have not gained enough experience in the field, since most of them have only read about such a defect in medical manuals. At the same time, in ‘Schoehn Klinik’, Munich, the medical procedure is performed without a surgical operation has long been applied to babies on reaching one month old. Sophia will have to go through lots of ordeals — undergoing operations, taking doses of anaesthesia and drugs. If Sophia will undergo the procedure in Germany, the amount of medical manipulations will decrease, and thus the probable negative circumstances could be reduced. This chance can be obtained only if EUR 15 004 is collected. Sophia’s parents, however, do not possess such a sum. We beg you for help the family!

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