Not got a Siepomaga account?
or sign up with e-mail
There’s an old saying that goes: „Every man in his lifetime should do three things: Build a house, plant a tree, and raise a son”. For me, that third one has always been the most important. For a long, long time I had dreamed of having a son; even before I met my wife. My dream came true twice! First Franek (Franciszek) entered my world, and today he’s a healthy, happy 14-year-old. Two years later, Karolek (Karol) was born.
With Karolek everything was a little different than it had been with Frankie. First, it was the pregnancy which had been much more difficult and filled with worries. At seven months the baby hadn’t been gaining weight adequately, and it was beginning to look like there was a threat of a premature delivery, so my wife had to take medications to try to bring him to full term. With this help, Karolek grew to just a little over 5 pounds at birth, and appeared to be a completely healthy kid. After all the worry, it looked like everything was just fine.
By the time Karolek was 6 months old, my wife and I were starting to notice that he wasn’t reaching the usual developmental milestones. There were dozens of visits to doctors, but there was no clear-cut opinion. Finally, they were able to diagnose cerebral palsy. This was a tremendous blow to me as a father, but I knew I had to keep myself together. I resolved that I would do everything I could to give my son a normal life.
Karolek’s development lagged behind his classmates’, but my wife and I could see that, thanks to intensive physical therapy, and a solid educational structure, he would be able to catch up with his peers. We found a pre-school for him that had a good program of early support, where they had good success in helping him learn to communicate using gestures and pictograms. Finally, we were able to communicate with our son! This was how we managed to interact with him up to the time he turned 5. At that point, from day to day, for no particular reason, he started speaking more and more in real sentences. We were thrilled to see this new development. Karolek was speaking! And he was speaking just as well as his classmates!
Despite the problems with speaking and a slower learning process, the solid developmental program at the school was helping us work out the various problems, and Karolek was advancing on conquering his incapacities. The next big challenge we had to face was confronting the epilepsy which was becoming apparent when he was two. We thank God that Karolek responded well to the available medications, and was developing a resistance to the disease. The most difficult part was our son’s struggle with muscular dexterity; there was inherent muscle weakness, and spasticity in the thighs. In short, Karolek couldn’t walk.
At three years old Karolek was learning to ride a horse and swim in the pool. The strides forward were beyond our expectations. The interaction with the horses turned out to be particularly valuable. One year later, he was managing to get around in a wheelchair. We struggled onward, and found that we didn’t have to wait long for better progress. When Karolek started school, he was able to get around the classroom on crutches. We were so thrilled! We were so proud! Our son was walking! On crutches, but walking...
We believed that one day Karolek would manage to move beyond those crutches, and that he would be able to walk normally. Unfortunately, life sometimes throws us a curve. Just when Karolek was getting to be so good on the crutches, he very rapidly developed dual dislocation in his hips. All the work at the pool, with the horses, hundreds of hours of physical therapy - it all collapsed into dust. Karolek was back in the wheelchair.
I told myself that even if I had to move heaven and earth, I would find some way to get Karolek back on his feet. The doctors confirmed that Karolek’s only hope was through surgery. Unfortunately, because of his von Willebrand’s disease, which causes excessive bleeding, an operation for Karolek would be especially dangerous.
We were between a rock and a hard place. We knew that without the operation Karolek would never be able to walk, but we were afraid that undergoing surgery could take him from us forever.
In Karolek’s deepest difficulties his most reliable support was his brother. From the very beginning they shared a special bond. They never needed pictograms to talk to eachother. Karolek couldn’t speak until he was 5, but that never kept him from communicating with Franek. Together they came up with their own ‘language’. Franek was always Karolek’s best caretaker and teacher. For years nobody would lift Karolek’s spirits the way Franek could. When I saw how much faith Franek had in his brother, I knew that I couldn’t allow myself to give in to my doubts.
After months of searching we located an orthopedic clinic in Aschau, Germany. This clinic had special equipment that wasn’t available in Poland. It could withdraw the blood, filter it, and return it to the body, which would dramatically reduce blood loss in the course of an operation. For a child with von Willebrand’s disease any operation holds a huge risk, but thanks to this equipment, that risk could be reduced to a minimum. Beyond this, the clinic had a method for binding the legs in a special removable truss, which eliminates the need for putting them in long-term casts. This means that during the day, Karolek would be able to move around wearing special braces. The doctors at the Aschau clinic are certain that the operation and intensive therapy can put Karolek back on his feet.
The care for Karolek is extremely expensive. So far we’ve managed from our own finances, but the time has come when we have to ask for help. Even though we are both working, we’re simply not in a position to afford the costs of this operation. But we believe that we will manage somehow, and Karolek will be able to walk again. Even the slightest donation moves us a small step closer to our goal. But without this operation, Karolek will spend the rest of his life in a wheelchair.