Probably the most rare boy on Earth.
We love him.
All people are unique. We have five children and all of them are different. Our youngest son Ivan, or Vanya, is different from the most regular people. He suffers of a rare genetic disorder, Allan Herndon Dudley Syndrome. A person with Allan Herndon Dudley Syndrome is recognized as disabled and often completely immobilized. Because of the weak ability to control muscle movements, these kids often can not speak, keep their heads and limbs in control, and swallow normally. About 25% of boys with this disorder have epileptic manifestations, so Vanya sometimes has sudden spasms. Feeding Ivan can last for more than an hour or several hours at times. In addition to the above described symptoms, Ivan has organic lesion of visual and auditory nerves. He is almost entirely blind and deaf.
Although Ivan found to be a disabled child, Allan Herndon Dudley Syndrome is so rare that to this day, it has not been included in a running list of rare diseases of Ministry of Health. In order for us to be able to qualify for services for him, we do it through diagnoses associated with cerebral palsy, epilepsy, blindness, and deafness, but not through Allan Herndon Dudley Syndrome.
Vanya was born and rescued in late January of 2014 by Caesarean Section due to fading heartbeat, six weeks earlier than the due date. After the birth, he was in the intensive care unit (ICU) for more than a month, connected to an artificial lung ventilation machine. Unfortunately, he had suffered a brain hemorrhage while in ICU. While he was in the ICU, we visited him every day during the visit hours. We talked to him, called him by his name, touched him when he was not sleeping. We could hear Ivan weeping silently because of ventilation machine tubes connected to his mouth and nose. Our older four children were waiting for him at home. The room that we prepared for Ivan was quiet, furnished with a crib, filled with new toys, shiny bottles, and clothes. After the ICU, Ivan had to continue his stay in the hospital in the Children’s Department.
We understood that Vanya was born an unusual child. When we finally brought him home, he immediately became very dear to all in our household. Taking care of him has dramatically changed our priorities in the family. Luckily, our children too understood the necessity of taking care of Ivan.
While Vanya was in the ICU, breathing through an incubator and having all the tubes coming out of him, I (the father) figured I was dealing with something very difficult to comprehend, your baby fighting for life or death. I was building my relationship with my son while he was in ICU. Vanya is a very, very positive person and likes human contact very much. He partially hears with one ear and we know that by rolling his eyes, he can slightly distinguish the movement of contrast objects. Vanya does not notice even the brightest toys; however, he loves touching and playing with them. He does respond to harsh light as he has 2% of his retina preserved. I communicate to him with my lips touching his skin on his face, the cheek area, right above his mouth and closer to his nose, as this is the area on his face that gets sensation the most. He does respond to this way of communication. I was the first that he started to smile to, even though nobody believed me. We talk and play with him all the time, and he laughs and responds in his own way. He loves to play with everything and recognizes it by touch. He loves touching and playing with my hair.
It was hurtful to hear from a respected doctor suggesting to abandon Vanya as carrying for him would take all our resources and strength that our other children needed. More than once, we have heard from doctors remarks such as Vanya has "low rehabilitation potential," or “we do not have expertise in understanding this syndrome". This means that we constantly must maintain positive attitude and believe in our son with only our own support as there is nothing in this world would force us to abandon him. We are very grateful to the doctors who did help over the course of the last three years. We are ready for anything to help Ivan. Furthermore, we still want to have enough emotional strength and love for all our children.