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Pavlova Dasha

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Diagnosis
Phakomatosis. Multiple stigmas of dysmorphogenesis. Congenital S-shaped thoracolumbar scoliosis. 4 c. Vertebral segmentation disorder. Klippel-Feil disease. Conjunctival dermoid, orbital bone deformity. Accessory spleen lobe.
Date of birth
born 18.08.2001
Place of residence
Odessa

Today, 11 October, Dashenka Pavlova passed away The girl was an example of love of life and struggle. Despite all her diagnoses and numerous surgeries, Dasha always enjoyed life, but, alas, the disease proved stronger.

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When she was just a month old, after a routine examination, she was diagnosed with many small cysts in her brain. Treatment was started, and it gradually resolved. But at 6 months, Dasha's parents noticed that one side of her skull was strangely deformed.

According to the surgeon, the cause was that the baby was being placed on one side too often. In 1 the lump on her head was already significant, and visits to the surgeon were unsuccessful, until Mom and  Dasha went to the Reznik Center and they told her it was osteofibrosis without an X-ray. In 2003 Dasha had the lump removed along with a piece of her skull. The hole was sealed with a polymer.

As soon as the girl opened her eyes after the surgery, the ophthalmologist saw a dermoid cyst in her right eye (the anesthesia had stimulated growth). At a routine examination, the child was diagnosed with left-sided torticollis, scoliosis, and flat feet. At four years old, Dasha's tonsils and adenoids were reduced.

After the lump was removed, the osteofibrosis began to grow again and now it even crept onto the polymer (non-living tissue), and also began to descend below — the face. In 2006 Dasha's parents took her to Kyiv, to the Romodanov Institute . There, the child's «skull was cleaned.» A year later, in

 Odessa, at the neurosurgery center, the girl had a dermoid conjunctiva removed from her right eye and an osteoma from the inner corner of the eye.

All this time, Dasha was treated for scoliosis and her intracranial pressure was monitored (the girl wore soft corsets, received massages, and underwent treatment courses).

In 2008 the child was taken to Kharkiv, to the Sitenko Institute. There, she was diagnosed with S-shaped scoliosis, the Th vertebral bodies1-Th7 are deformed, and left-sided torticollis. She was prescribed a Chenot brace 22 hours a day. Since then, the mother and daughter have been going to Kharkiv every six months.

In 2010 they were in «Okhmadet», where the child was diagnosed with phakomatosis, multiple stigmas of dysmorphogenesis, congenital S-shaped scoliosis 4 of the degree, vertebral segmentation disorder, Klippel-Feil disease, conjunctival dermoid (again), orbital bone deformity, and accessory spleen lobe. Recommendations: wearing a corset.

There were also surgeries: on the right ear, which had closed due to osteofibrous dysplasia. But since the girl's parents didn't have much money for treatment, they didn't open the ear completely, but they simply removed the  visible growths and sent it for histology. Now Dasha's ear is almost completely deaf (in  further surgery is needed to open it).

She also needs surgeries to reduce her tonsils and adenoids, remove growths (fibromas) on her legs, and remove a cyst on her right ovary.

Dasha still has many surgeries ahead of her, but, at the most important, complex, and expensive operation, — is the operation to correct her scoliosis.

In December 2013 of the year, the girl attended a consultation with Professor Harms at the «Ethianum Clinic», and he agreed to operate on Dasha! The operation will take place at a German clinic «Esslingen» (Stuttgart). The total cost of all expenses is: 64, 798 euro. The surgery must be performed as quickly as possible; otherwise, as the disease progresses further, spontaneous paralysis can be expected due to compression of the spinal canal at the cervicothoracic junction! Dasha suffers from pain in her back and legs.

Also, because the child has been wearing a  6 corset for corset for corset itself. She can't live without it, and it's hard to difficult. It chafes her skin and leaves bruises on her back and tailbone. Dashenka can't walk for long periods of time because of the significant difference in leg length. Every trip becomes torment for her. The girl has to stop and squat down to relieve the pain in her legs and back. Due to torticollis, Dasha has difficulty breathing, and she then tries to straighten her head more to the right side and to free her breathing.

The sick girl's family is asking for help from kind people. Please help Dasha get healthy! Thank you all in advance!