Kevin was born three weeks before his due date. He was born as a small, healthy boy. He got a 10/10 grade in the hospital as a newborn baby. His birthday also became the day when I started living for "someone of mine". He was my soul, my heart, my oxygen. I never left him alone for a moment. After about a month from his birth, my first tears of sadness and fear began to fall. Kevin was diagnosed with a non-specific hearing loss in the left ear, while the right ear has completely normal hearing. I cried inconsolably because I didn't know how and what to do next. The doctor saw how I reacted emotionally and instead of supporting me with understanding, they sent my husband and I to talk with social workers and psychologists... in the meantime, Kevin continued to grow and I began to notice that he had no reflexes in his eyes and that he was not following my finger or does not close his eyes when something suddenly approaches him. I said this at his regular checkups, where they immediately did a "small checkup" and said they thought he was blind. My world stopped, I lost the ground under my feet, I had the feeling that it was a mistake. And it was, after many controls and detailed checks, it was found that Kevin has a problem with the eye muscles and reflexes, as well as slightly impaired vision, but he is not blind. After his six months, we found out that he does not have a complete loss of hearing in his left ear, but a partial one. As he grew, I noticed that he has weak muscles in his neck and that he constantly shakes his head, he does not crawl like other children, but drags himself on the floor. His first birthday has come and he hasn't even crawled yet. People told me that it was my fault and that I spoiled him and that it would come with time. Let me mention that Kevin still hasn't slept through the night in one piece since he was born. Our nights were very bad, full of screaming and crying, and the reason was unknown. I felt something was not right, something was not normal. For days I called various hospitals and begged them to do an MRI of Kevin's brain. Kevin started taking his first steps with one hand at 18 months. In the meantime, we got an appointment for MR. The MRI was done about a month or two before his second birthday, and we got the results 5 days before his second birthday, over the phone. They told us over the phone that "your child has brain damage, we can't tell you more details, we will refer you to another hospital that is more specialized for that." Given that Kevin is not yet walking independently, we recommend that you go and pick up the aids at rehabilitation." Fear, crying, pain, an unknown situation...But, in that pain, we proudly called our doctor, Kevin started walking on his own, hung up the phone and stayed in silence for hours. On that day, my task became to make Kevin's life the best possible and find out what is the cause and how to help. Every day we practiced through the game, went to rehabilitation, talked to psychologists, went to various tests and then found out. Our child has a genetic mutation of the TUBB3 gene, de novo. Everything is unknown to the doctors, and they don't know how to deal with him. We didn't give up even then, I searched and read a lot about it and how to help the child. Kevin is now 4 years and 6 months old. He is a cheerful boy who goes to kindergarten, adores his young sister and animals. He is so different and yet the same as other children, he is special. He has that "something" that makes all the people who meet him adore him. He still has some minor physical and mental problems, but he is making progress and is happy, which is the most important thing.
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