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Thanks to the medicine, Adelia will be able to hold a spoon and dress herself.

AiF. Dobroe Serdce

Charitable foundation · Moscow

collected

of RUB 197,640

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Thanks to the support of 837 users of the Tooba mobile app, ten-year-old Adeliya Kayumova has two months of intensive therapy ahead of her, which the family and doctors have high hopes for.

Adelia's diagnosis, alas, does not suggest any miraculous cure. Metachromatic leukodystrophy is a complex, progressive autoimmune disease from which there is almost no cure. Almost - because doctors are confident that administering a drug of highly purified immunoglobulin will give the girl and her family another long reprieve. And with each new gram of expensive medicine, the myelin sheath of the nerve fibers will stop deteriorating so rapidly, and signals will again be able to reach the arms, legs and lungs.

Adelia is a smart girl and understands everything that happens to her. Her brain is working fast and well, but the signals from it are getting slower and slower, and all the nerve endings in her body are covered with sulfatide, like wires are rusty. But the course of treatment, for which you have collected 197 thousand rubles, will help to stop these destructive changes for some time.

Leukodystrophy is aggressive and sets in quickly, but the Kayumovs have high hopes for immunoglobulin G: now this is virtually the only drug with a proven effect, capable of halting the breakdown of myelin. The drug will remove the exhausting muscle tremor, and the daughter will be able to hold a spoon and dress herself again, see better, and eat not only soft grated food - this is an incomplete list of everything her parents hope for. And stock up on colored soap bubbles, blowing out which the daughter will soon have the strength. And not just for rehabilitation, but just for joy.

Thank you so much to everyone who gave the Kayumovs hope!

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About the campaign

Adelia needs medicine to fight for her life

Every day Adelia is fighting for her life. The girl has a severe autoimmune disease, which causes the nerves to stop running a signal. Then Adelia can't move her fingers, blink, or stand on her feet. She even says the word "ma-ma" is long and syllable by syllable. Until the age of three Adelia was an ordinary child: ran around the room, in kindergarten recited long poems by heart and blew out all the candles on the cake at once. Now she can't do any of that. For two years the girl has been sitting in a wheelchair, sleeping at night on a non-invasive artificial respiration machine because of endless respiratory stoppages. She cannot bring a spoon to her mouth - it just jumps out of her naughty fingers. She loses her vision and has difficulty chewing and swallowing her food. She can't lift her arms up for her mother to put a T-shirt over her weary 19-kilogram body. At the same time, she is intellectually intact and gets frustrated watching her friends' children play with her toys and her mother passing the shelf with her favorite apples and taking bananas (the food has to be soft) at the store more and more often. Adelia's disease has no cure, but it can be slowed down. The immunoglobulin drug, which will alleviate the child's condition, costs 90,000 per gram and is not available under the MHI. The girl needs 19 grams in a month. This is the only way to return the lost skills, if not to make Adelia's hands stop shaking, and to give her muscles some strength and strength in her body. For the girl to stay with her loving family as long as possible. Without suffering. Can we help?