The Story of Anelia and her mother's unwavering love and hope. Living with a rare genetic disease

"I remember the moment they told me that I should be happy because I had given birth to a very calm child. My heart swelled with joy, and I felt like I had been blessed with the perfect baby. But that joy didn't last long."

Waking up every morning, the child screamed terribly. Doctors suspected that Anelia had developed early-onset colic. In an attempt to ease her discomfort, the mother began feeding Anelia artificial nutrition, but unfortunately, it didn't provide any relief. At just three months old, Anelia began to suck her fingers so vigorously that it resulted in damaged skin. As she grew older, and her teeth started coming in, she began chewing on furniture and metal objects, ultimately leading to tooth loss. Her self-destructive behavior continued as she chewed on her tongue and cheeks with the remains of her teeth, resulting in painful wounds. Despite the mother's plea for help, the medical professionals were unable to understand the root of Anelia's condition.

"I knew something was wrong with my baby, but the doctors didn't seem to understand. They told me she had colic and that it would pass, but it didn't. Anelia was in constant pain, and I didn't know how to help her."

She took Anelia to doctor after doctor, but no one could tell her what was wrong.

"They said she had bad habits, but I knew it was more than that. Anelia didn't feel pain, and that was causing her to hurt herself over and over again."

Alina realized that she would not receive help from the doctors. She started searching for information online. She discovered that Anelia had a rare genetic disease, hereditary sensory-autonomic neuropathy. This disease is found in one child out of 125 million. The disease is caused by a genetic mutation and has several stages. If the child has the most severe fourth stage, then, as a rule, the child does not survive until the age of ten.