Due to a rare condition, Dasha cannot sit. She needs a special wheelchair

From birth, Dasha had very weak muscles and no reflexes. The neurologist treating her suspected SMA, but at two months of age, she underwent complex genetic testing that revealed nemaline myopathy. This is a rare congenital or hereditary muscle disorder characterized by the appearance of abnormal thread-like and rod-shaped protein structures within the muscle fibers.

At the age of three, Dasha suddenly fell into a coma. The little girl spent a month and a half in the intensive care unit; when she regained consciousness, it turned out she could neither breathe nor eat on her own. She was first fitted with a tracheostomy tube, then placed on a ventilator and fitted with a gastrostomy tube.

"Dasha is now 10 years old; she is homeschooled through a special education program and has learned to speak and communicate on her own. She loves having guests over and is a talented artist. Despite her condition, she is very neat and likes everything to be in its proper place," her parents say.

Due to her diagnosis, Dasha cannot sit up or straighten her legs. Standard wheelchairs are unsuitable for her, so her father had to fashion a special chair out of a stroller and a mobile table so she could lie down in it.

Specialized wheelchairs are expensive, and it is impossible to obtain one through state funding, as only standard wheelchairs for seated patients are provided free of charge. We are launching a fundraiser for a specialized wheelchair for Dasha and ask for your help.