I dream to sew again!

Elvira and her mother heard the phrase "orphan disease" for the first time this year. The girl could not be diagnosed for a long time, and only this autumn it was determined that Elvira had systemic scleroderma, and she was prescribed a constant intake of the drug, the cost of which is about UAH 10,000 per week.

Elvira Orudzheva grew up as a healthy and active child for 10 years. And in the fall of 2019, her mother received a call from school and asked to pick up Elvira, because her hands turned blue. This reaction is called Raynaud's syndrome, and doctors at the Regional Hospital have diagnosed heart disease. The prescribed treatment initially helped, but then suddenly the joints on her arms increased, the girl began to lose weight. A new examination in a private laboratory made it possible to make the correct diagnosis: juvenile systemic scleroderma.

This autoimmune disease affects the skin, blood vessels, musculoskeletal system, heart, lungs, gastrointestinal tract, kidneys: fibrous tissue grows around the vessels, their walls thicken, the blood supply to organs is disrupted, which leads to severe disability. In Dnipro, Elvira was injected with Methotrexate, hormones and other drugs, but it almost did not get better: his legs, arms, head ached, the child stopped walking. Mom asked to send her daughter to Kiev, so they got to the Institute of Pediatrics, Obstetrics and Gynecology.
After examining Elvira, the doctors determined a new treatment plan. They canceled the previous medications and prescribed a constant intake of Actemra. You need to prick it for several years in a row to bring the child into remission and compensate for severe symptoms. After the first injection, the girl felt much better: her right leg still hurts, but Elvira is already limping less and has become much more active.

Systemic scleroderma is a rare disease, but it is not included in the short list of diagnoses that the state provides with drugs. The legislation proposes to pay for medicines for such patients from local budgets. But Elvira's family lives in the village of Pervoe Maya, Solonyansky District, and the community is unlikely to find 40,000 UAH per month for one child. Mom will turn to the community for help, but if funds are allocated, then not earlier than next year. Elvira needs the medicine now.

There is little work in the village where Elvira lives. Dad works paving roads, Mom sometimes hires out seasonal work in the gardens, but for the last two years she has been with her sick daughter all the time. In addition to Elvira, the family has two younger children. We are opening a collection for 2 months - for UAH 80,000. Uninterrupted supply of medicine is very important for Elvira to quickly enter remission, stop suffering from pain, return to school and her favorite hobby - sewing. (Elvira with great pleasure sews dresses for dolls with her hands, dreams of a sewing machine and the profession of a designer).

Let's help the little girl live an active life without suffering!