Sasha Trefilova is 15 years old, she lives with her mother in the city of Kirov. Sasha has a severe curvature of the spine, a rib hump has already formed. Neither massage, nor physiotherapy exercises, nor swimming lessons helped - the girl's condition is only getting worse. Sasha is gasping for breath, her back and legs hurt, her head is spinning. An urgent operation with the installation of a metal device on the spine will help. The construction Sasha needs costs about a million rubles and is not paid from the state budget.
Sasha always takes a sketchbook and paints with him to the hospital. And when the pain becomes unbearable, he begins to draw. The girl studies in an art school, draws superbly, her works participate in exhibitions in her native Kirov and St. Petersburg. Some of them she wrote in the hospital, in between procedures.
“My daughter started drawing very early,” recalls the girl’s mother, Zhenya. - When I was two, I painted the sun - even, like a compass! And she was diagnosed with a spinal disease even earlier - a year and eight months. Since then, we have been treated.
When Sasha was born, the doctors diagnosed her with torticollis, but said that soon her neck would straighten. Indeed, the neck fell into place as soon as the child learned to hold his head. And then Sasha got sick. She had a fever and a severe cough. With suspected pneumonia, the girl was sent for an X-ray. The lungs were clean, but the problems were much more serious.
The local doctor just shrugged his shoulders and ordered a referral to the Kirov Regional Children's Clinical Hospital.
There, according to the results of the examination, Sasha was diagnosed with Klippel-Feil syndrome, a rare congenital malformation of the cervical and thoracic spine. None of the doctors dared to predict how the vertebrae would behave further. The girl was prescribed massage and exercise therapy. Twice a year she went to the regional hospital for examination and special procedures.
At the age of six, Sasha entered an art school, a year later - to a general education school. She studied at one grade.
One day, my mother noticed that when her daughter was drawing or doing her homework, she tilted her head to her left shoulder. Sasha did not complain, but her mother decided to show her to a traumatologist. Doctors performed computed tomography of the spine, which showed not only multiple developmental anomalies, but also the initial degree of scoliosis. Despite the obvious deterioration, it was decided not to change the treatment.
By the age of ten, Sasha had stretched out strongly, and the curvature sharply increased, then the experts first started talking about a possible spinal surgery.
“But my daughter and I really hoped that daily exercise and a pool would help stop the curvature. And for two years there have been no changes for the worse, - says Zhenya.
And then Sasha got worse. The girl has grown by 12 centimeters, shortness of breath, pain in the back and joints. Sasha could not bend down to tie her sneakers, and unbending was even more painful, at night she was tormented by convulsions and nightmares.
- I just didn't recognize my daughter, - Zhenya sighs. - She could not walk to the nearest bus stop without rest. Stopped halfway and lay down on the grass. I accompanied and met her from school, because she could not carry her portfolio - she was suffocating. After the slightest exertion, the pulse was under 100. Without pain pills, she could no longer fall asleep. I had to quit my job.
After another consultation, the orthopedist recommended that Sasha wear a Chenot corset. For a while, he eased the girl's condition, but as soon as the corset was removed, the spine curved with the letter S, and the pain returned with renewed vigor.
Zhenya learned that in Moscow, at the Scientific Medical Research Center (NMRC) of Traumatology and Orthopedics, there is Professor Kolesov, who performs unique spinal surgeries using the latest technology, and she took her daughter to him for a consultation.
The doctor explained that the operation is needed as soon as possible, since the curvature will only intensify, because of this, the work of the heart and lungs is disrupted, and the risk of neurological complications increases.
This operation will be carried out for Sasha at the expense of the state budget, but the cost of metal structures is not covered by the budget.
“When we ordered Chenot's corsets for Sasha, I took extra work, washed the floors to pay for everything,” says Zhenya. - But I can't earn money for a structure worth almost a million rubles.
Head of the Department of Spinal Pathology, N. N. Priorova Sergey Kolesov (Moscow): “Sasha has grade 4 idiopathic thoracolumbar scoliosis, a progressive form. Deformity was revealed in the thoracic spine, with the formation of a counter-arc in the lumbar spine. There is a high risk of cardiopulmonary failure. The girl needs an operation that can be performed in two stages using the new VBT technology. First, we will perform the correction and fixation of the thoracolumbar spine using a special flexible cord - cord, and a month later - rigid fixation of the upper part of the thoracolumbar spine with the Dynesys system. This gentle method will allow you to maintain the mobility of the spine and avoid complications. After a period of recovery, Sasha will be able to live a full life, forgetting about his illness."
The cost of the metal structure is 974,497 rubles.
At 17:00 (03.03.21) 239 readers of "Lenta.ru" collected 552,134 rubles.
422,363 rubles are missing.
Dear friends! If you decide to help Sasha Trefilova, do not be confused by the cost of saving. Any donation will be greatly appreciated.
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