Little Ania: a life against the diagnosis

Ania was born a healthy girl without any complications. However, at 2.5 months old, her mother noticed hypopigmented spots on her daughter's body, and at 6 months old, Ania was unable to roll over on her own – her mother's heart sensed that something was wrong. When Ania turned 7 months old, endless consultations began: a geneticist, an MRI, a dermatologist. However, they did not provide any answers. And at 1 year and 1 month, the most frightening moment occurred – a generalized epileptic seizure. That was when the family first heard the diagnosis of “Ito hypomelanosis” – a rare disease with no established cause, which is not hereditary, does not manifest itself before birth, and cannot be cured. The only options are symptom control and lifelong rehabilitation.

Ania's development is delayed: she started sitting closer to a year old, crawling at almost two, and walking independently at 2 years and 10 months. Today, she has difficulty maintaining her balance, moving up and down stairs, and riding a scooter. Her concentration and motivation are reduced, and two antiepileptic drugs also have an effect.

But despite all the difficulties, Ania achieves small victories every day. She eats and drinks independently, goes to the toilet, can dress and undress herself, and understands spoken language. Ania attends a specialized kindergarten in Kyiv and works with a speech therapist, a defectologist, a physical therapist, and ABA specialists. Each of these achievements is the result of hundreds of hours of rehabilitation and perseverance.

Today, the family lives with a diagnosis that does not answer the main question: “Why?”. But they are not giving up and are asking for support for Ania so that she can undergo a new course of rehabilitation. Will we help her?