Milan was three months old when his mother Silvana noticed that something was wrong. Her son made strange, shocking movements with his arms and his eyes turned away. She made a video and sent it to her doctor, but there she was told that it was probably a trauma action after the operation on his hare lip. Yet it kept gnawing: “I felt it wasn’t right.”
Silvana Meulenhof stores from Helmond did not leave it at it and went looking herself. “On the internet I found a video of a child with West syndrome, a rare form of epilepsy in young children. Milan did exactly the same.” She called the pediatrician with her findings. He immediately took her seriously. Milan was allowed to come by. During the appointment, Milan received an attack and he was immediately examined by a pediatric neurologist. “A brain scan followed and fairly afterwards the West syndrome was diagnosed with him in February 2024.”
A period of more than a year followed with investigations, hospital admissions, medicines and a diet to look for a solution for Milan’s attacks. But nothing seemed to help. “It only got worse. Milan sometimes had fourteen attacks one day. It was heartbreaking. He had several MRI scans that could not be seen. But we just kept feeling: there must be more going on.”
One day Silvana and her husband Ron received terrible news from the doctors: if nothing were to catch on, their son might die early. “That broke my heart.”
Silvana demanded one second opinion: “Milan did not use his right hand. As a result, I had the feeling that more was going on. I would rather have given three doctors the same answer than I had left it.” In another hospital, the scans of Milan were reviewed, and with success: “A building disorder in the brain that the doctors had previously overlooked.”
Milan was eligible for heavy brain surgery. In April this year he underwent a hemisferectomy, an procedure in which a large part or the entire half of the brain is removed or disconnected from the other half of the brain.
Milan turned out to have Moghe, a rare brain defect, in combination with a gene abnormality. According to Silvana, this combination is only about sixty times worldwide.
Since the operation, Milan has no longer had any attacks. His medication against epilepsy is slowly being phased out. But because of the persistent attacks and the absence of effective treatment, Milan has sustained a major developmental delay: “He makes very small steps in his development. His IQ will remain very low and we don’t know if he will ever be able to talk. He can grow old. You learn to enjoy all the little things in life as parents. looked. “
Silvana shares her story especially for other parents: “I want to tell them that they have to rely on their feelings. If something feels wrong, keep ringing the bell. You know your child better than anyone else. Don’t let yourself be sent away and keep fighting for your child. Sometimes your feeling is exactly what is needed to make the difference.”