When Eva is interested in something, she smiles. So it is easy to understand that she likes stuffed toys, “Masha and the Bear” animated series, fairytales, and going to the swimming pool. Eva is 4 years old, and the children’s amusements are a strenuous task for her.
Eva has spinal muscular atrophy (SMA) type 1. It is a rare genetic disease resulting in progressive muscle wasting. When Eva was 3 months old, her parents found out about her diagnosis and started to obtain information on the possible treatment. They read about the ongoing experiments and promising therapies. The family had to move to Europe for some time so that Eva was able to participate in a clinical trial.
Eva still gets her medicine—it suspends the development of her disease—and rehabilitates. She even has a “costume”, an orthopedic corset and leg tutors, which she wears daily. Thanks to that, Eva can sit by herself, raise her shoulders, and move her arms. She draws on the screen with her fingers, flips through books, sorts out small objects. She can play the way her disease would not allow her.
However, there are some difficulties, too. Eva is weak and eats via a nasogastric tube. The assist ventilator helps her breathe at night.
Eva grows up. Now she needs a stroll wheelchair so she could take regular walks. We intend to raise ₽110,905 to buy the stroll wheelchair suitable for Eva. Your support is much appreciated.
