Silence, small steps, and colored pencils

In a village in Neamț County, a little girl draws at the table, looking out the window at the other children playing outside. Sophia lives with her mother, Adriana, and her older brother in a single room in her grandparents' house, which also shelters her mother's sister and her two children. 

Although she is four years old, Sophia weighs only 8.9 kilograms and is 78 centimeters tall. She can only walk on flat ground, cannot climb stairs on her own, and tires quickly. She loses her balance easily, and every step must be taken with care because she suffers from a condition that makes her very fragile and prone to fractures, even from the slightest falls. 

However, Sophia has very well-developed fine motor skills. She draws with attention to detail, writes a few letters, counts, and uses English words she has learned on her own from television.   

Her mother is single, and her father does not contribute regularly to raising the children, only helping when large medical expenses arise. Trips to the doctor are frequent, tests are expensive, and uncertainty is constant. Adriana recalls the advice she received from the maternity ward staff after giving birth:

Today, she says she sees her as healthy and beautiful, but she fears the day when Sophia will be viewed differently from other children. 

Her mother is her personal assistant, which provides them with a stable income and allows Sophia to be cared for around the clock. The community social worker provides constant support and has helped the family obtain the necessary documents and the benefits to which they are entitled. She is also taking steps to enroll Sophia in kindergarten, with her mother present in the classroom, so that the little girl is safe.

Doctors say that, perhaps around the age of seven, Sophia will be able to have hip surgery, if her health and weight allow it. Until then, she needs continuous care, medical investigations, and access to education in an adapted environment.