Help Milana overcome a rare disease

Milana was born at 42 weeks of pregnancy. At 3 months old, her parents heard the first alarming diagnosis – myotonic syndrome. Since then, it's been a long journey of neurologist's appointments, massages, therapies... and constant struggle. Developmental delays became noticeable already in the first year of life, and at 2.5 years old, Milan could not stand, walk or talk on her own. An MRI scan showed serious changes, and the girl was assigned a disability (subgroup A). Rehabilitation began.

Initially, the diagnosis was the consequences of a neuroinfection, spastic tetraparesis. Later, after an examination at OKHMATDYT, she was diagnosed with ataxic cerebral palsy. But the family received the biggest shock last year – an exome genetic test confirmed a rare orphan disease: primary coenzyme Q10 deficiency, type 9 (autosomal recessive inheritance). He also has 1-2 degree protein and energy deficiency. But even with all this, Milana does not give up!

Thanks to constant work and the love of her family, she has already learned to walk with support, understands everyday requests and eats on her own. But her journey is still ongoing. To improve her quality of life, reduce the manifestations of the disease and maintain the results achieved, Milana needs constant rehabilitation, medical support and special nutrition.

We ask everyone who reads this story to support our girl and help her get into rehabilitation. Each hryvnia is a step towards Milana's independent life, towards her dream, towards a childhood without pain. Together we can give her not just help, but hope!