It is difficult to accept that the child's life begins in pain, tears and utter helplessness. It is difficult to accept that a child will not have a "normal" life. A detrimental diagnosis - spina bifida with coexisting hydrocephalus. What does it mean? The doctors' answer was: "Your child will not walk, maybe it will sit, in principle, there is no chance for physical and mental development."
On the day when Natalia was born, our world changed - it was re-evaluated. When a child is ill, its whole world as well as the world of its family, is subordinated to this disease. Nothing matters except finding a miraculous way to eradicate suffering and bring recovery. But there are no such wonderful means. So it has begun - completely unprepared for such a life, we started the struggle against meningitis, strokes, operations, re-operations, doctors who did not give Natalia any chance, rehabilitation, implantation of the intraperitoneal valve into the brain, removing it, re-implantation.
We did not give up, but the doctors' diagnosis was unchangeable: “Your child has no chance of walking. That was until 2009, when we found out about the Clinic in Aschau, Germany. We went to the Clinic and hope has returned. Nobody said here that Natalia had no chance for development, for independent functioning. The operation of the feet proposed by the doctors from Aschau breathed hope into our lives, but it was also a reason for tears and fear that we would not be able to make it. The cost of the operation amounted to PLN 100,000. It was also necessary to provide orthopedic equipment - covered by the so-called patent. The orthosis ring made by an orthopedic company cooperating with the Clinic in Germany.
The surgery and orthoses are not refunded by the National Health Fund. We have started the struggle to overcome financial obstacles. In 2010, Natalia underwent a foot surgery, followed by the orthopedic equipment and rehabilitation. Natalia stood on her feet and took her first steps, which was thought to be impossible. First it was with the walking frame, next she did it with crutches. That meant a lot to us. In 2015, Natalia underwent two re-operations of the intraperitoneal valve and in 2017 the operation of the spinal cord unsealing.
In 2017, we noticed that while walking Natalia began to get tired more. This bothered not only us but most of the doctors too. Once again, we went to Germany. And again, tears and our helplessness. Doctors from the Clinic in Germany have stated that if we do not want Natalia to sit in a wheelchair, we must undergo another orthopedic surgery - this time it is a knee surgery - implantation of mechanisms that eliminate contractures and provide her with special orthotics after surgery.
The cost of the operation was estimated at EUR 15 676,11 while the cost necessary immediately after the operation for the orthopedic equipment at EUR 13,632.11. And this time we can not count on a refund from the National Health Fund. And fear again: “Will we be able to do it ? Will we lose twelve years of fighting for Natalia's "normal" life? After so many years of fighting, will it prove that she will have to spend the rest of her life in a wheelchair”? We do not want this, Natalka does not want it. Horror, tears, what's next?
The operation must be performed until tissue growth in the knees is completed. There is not much time left, whereas there is so much to lose. We still have about PLN 60,000 for orthopedic equipment to raise. Doctors will not undertake surgery if the child is not provided with orthoses right after surgery. They have found that without proper postoperative supply there is no sense in surgical intervention. As parents we feel helpless. The date of the operation was scheduled for 15 November 2018.
Natalia, despite her illness, is a cheerful girl. She can enjoy small things. She attends elementary school and also has little success in learning. Natalia has already achieved so much, although her achievements cost many sleepless nights, crying because of pain at night. She is so close to overcoming another obstacle, to overcoming another milestone step towards independence. She is also so close to losing everything and spending the rest of her life in a wheelchair. We cannot make it without your help.