Adélka and Janek Učeň
Ten years ago, on July 28, 2000, our dream of having children came true when our twins Janek and Adélka were born. However, during (spontaneous) delivery, complications occurred and our son suffered from serious oxygen deprivation. Our daughter was born with a serious developmental defect that had remained undetected throughout the pregnancy, in spite of all examinations and screenings that I had undergone. Both children had to fight for their lives right after birth. Our son depended on artificial respiration for six weeks after birth and underwent neurosurgery – a hematoma was removed –, but his brain had already suffered permanent damage from the long-term oxygen deprivation during delivery. He suffers from a severe case of spastic cerebral palsy and today is still a little baby of sorts, at eight years of age.
Only after eight months in the hospital, we were allowed to take our daughter home. By then, she had undergone surgery twice, as she was born with meningomyelocele (MMC) in the lumbosacral spine (spina bifida – a "split spine") and hydrocephalus. Adélka gets around in a wheelchair, as she is paralyzed from the waist down. After the summer recess, she will be attending the second grade of the elementary school in Trmice. She is a cheerful and clever child and loves school – not least because she found many friends there and has so far had no problem finding her place among her non-handicapped peers.
I stayed home with the children, because both require constant care. Janeček is unable to attend any educational facilities due to his handicap, and Adélka of course has to be brought to school by car every morning; I also must visit her at school after the second class in the morning to catheterize her. After lunch, Adéla is brought home by an assistant. During my absence, our son is tended to by his grandparents, with whom we share a roof in their family house and without whose aid and assistance we would be lost. My husband is employed with a private company and unable to help me during the day.
Our biggest problem at the moment is transportation – of the children, the pram, and the wheelchair. Given the insufficient size of our family car, I am no longer able to transport both children and their perambulatory aids at the same time. Our son, who is incapable of sitting upright and indeed of supporting his head, must be transported on a special stretcher. Also, in winter, we got him a new rehab stroller, which is super comfortable, but unfortunately also very large. Our daughter has a mechanical wheelchair without which she cannot function and which we constantly have to drag along from one place to another, because I am no longer able to carry her in my arms, now that she weighs almost thirty kilos. What is worse, her wheelchair is of the solid-frame type (a decision we made in consideration of their higher quality and durability), and therefore not collapsible. Since she utterly depends on her wheelchair, we got her the best model available.
The purchase of a car with additional seats and a larger storage space would resolve these issues. However, we lack the necessary four hundred thousand crowns to make such a purchase, and saving up that much money is beyond our means. But we believe in the kind understanding and generosity of people. Please help us to be able again to go on a family trip – of course, such recurring weekly chores and activities as rehabilitation, Adéla's extracurricular group activities, and of course visits to medical specialists would also become a lot easier.