My children felt everything. When my father was losing his health, my daughter, Marlena, would say: Mum, I know, it awaits us too.
Renata Witkowska is 46 years old. Already at the beginning of the conversation, he stipulates: I am healthy! Out of a family of four, only she can say that about herself. Her husband, Wiesław, and two adult children, 24-year-old Piotr and 22-year-old Marlena, are terminally ill.
– The husband and children suffer from cerebellospinal ataxia, which is a predominantly inherited genetic disease – says Renata. – This means that if one of the parents is sick, the probability that the child will also be sick is 50%. When I met my husband, he did not know that she was burdened with this terrible disease. He was a handsome 21-year-old. I met him while on vacation. When our children were born, it would never occur to us that they would live with the sentence. Unfortunately, both the son and daughter inherited the disease from their father. Ataxia is incurable. It takes away strength, health and willingness to live slowly, for many years. First, the patient loses motor coordination, stops walking independently, then his speech is disturbed, and there are problems with performing the simplest activities. He suffers from painful muscle spasms and their atrophy. It’s all because of the progressive loss of nerve cells in the cerebellum and spine. In my husband, the first symptoms appeared after the age of 30, in children, as in adults.
The photo shows Mr. Wiesław. Photo family archive
The small apartment of the Witkowski family is clean and tidy. – Only the bathroom so that you would like to throw a grenade at it – the hostess laughs. The family lives on Wiesław’s small pension and the salary of his son, who, despite his illness, goes to work. Most of the money goes to rehabilitation. But there is no grief or lamentation in the house. Renata makes sure that there is a relaxed atmosphere. He laughs a lot with children, he jokes. She says that even if she used torture from Wieśka, she would not draw a word of complaint. Despite a serious illness, children try to live normally. Marlena graduates from high school in absentia, Piotrek goes to work. If not for his small salary, it would be fragile.
– After the wedding with Wiesie, we agreed that I would be at home with the children – recalls Renata. – The husband worked as a car mechanic. Now, both my husband and children require constant care. I have to be with them all the time. Over the last few months, we have been collecting funds for a trip to a clinic abroad, where after a stem cell transplant, there is a chance to stop the disease. The only question is, to what extent the organisms of the children (the husband did not qualify for the transplant) adapt to the new situation? However, this is the only chance for them to function independently in the future. If it weren’t for people of good will and the help we received from them, we could only dream of going for treatment.
Renata remembered the day when the results of the children from Warsaw came well. Since 2000, it has been known that Wiesław suffers from ataxia. A year ago, Marlena and Piotr were subjected to genetic testing. The daughter did not want to consent to them for a long time.
In the photo, Marlena and Piotrek. Photo family archive
– Marlena was terribly afraid – tells her mother. She sensed that something was wrong with her body. She also saw her dad losing strength day by day. There was an option to have her tested just after her 18th birthday, but she declined. Only the news of the fantastic results after the stem cell transplant has restored her hope for a better life. Last year I took her to Warsaw for research. Piotrek also went with us, for the sake of peace. When the results came back, my son went to the kitchen table, tore open the envelope and told Mummy, so did I. It was the only time I wanted to scream: why has this happened to us ?!
Ataxia usually begins between the ages of 30-50 and is initially imperceptible and relatively slow. Dizziness and problems with balance appear. Then the whole body refuses to obey. Arms and legs seem to get out of control of the brain. Gradually, walking becomes impossible. Speech is gibberish, it is impossible to keep eyesight on a specific object, sometimes hearing is lost. Balance disorders are associated with damage to the cerebellum, slurred speech with a weakening of the muscle tone of the speech organ. The progressive muscle degradation resulting from damage to the nervous system that is characteristic of ataxia is referred to as polyneuropathy. Many sufferers complain of frequent cramps that make it difficult to walk and even make their limbs out of control, leading to falls. (quoted after Elżbieta Gutowska, art. The Neuron Thief)
With Wiesław, Renata’s husband, it started innocently – with pain in the leg.
– I remember when Wiesiek came home from work and complained that his leg hurt, that he did not know what for. He also became tired and sleepy. He ate dinner and went to bed. He woke up still tired. I knew his family had a cousin who had muscle wasting away. Another has been diagnosed with MS. Something touched me to tie it together. I thought to myself too many sick in this family. Mother Wiesia also died after great suffering, but no one could say what for. She passed away in her 50s, having lost touch with reality. She stopped moving on her own, she lost her speech. When my husband began to fall ill, I started running with him from specialist to specialist, I literally forced genetic tests on them for my husband in Warsaw. Wiesiek underwent a series of specialized tests, after which no one had any doubts that it was ataxia. The husband was then 36 years old.
The blow to the family was even greater as the children were also at risk of the disease. Ataxia has a very high inheritance rate. Renia was shocked to learn that both their children were sick.
– Marlenka was sick from birth. The symptoms of ataxia appeared much earlier in her than in her brother. You couldn’t see anything after Piotrek. My daughter, on the other hand, was crying and saying to me: mummy, I sense something wrong. She was 16 at the time. But Piotrek behaved like a specimen of health. He went to school, he was happy. No imbalances, no stumbling. When it was confirmed that he hadn’t missed him, I thought my heart would break. I prayed to God and asked for one thing – Give me the strength to bear it all. And she never doubted you were.
After the children were diagnosed, a new chapter began in the Witkowski family. Renia bent over backwards so that they would not become depressed or break down.
– I had a great need to act. I was running around specialists, looking for help wherever I could. I was looking for rehabilitation, knowledge, hope … I was not afraid to talk about our misfortune. I was not ashamed. But I also stuck to the rule – no complaints! When my daughter was no longer able to attend normal school, I encouraged her not to stop studying. She finished high school in a part-time system. It was not easy. Córa has very difficult moments. There are days when she still cries. We then talk to her and explain that her life is important. It is just as worthy as any other. And her fiancé repeats: This is why God gave us this love, so that we could care for each other. Today I am helping Marlena, and maybe in a few years she will help me.
Piotr Witkowski walks confidently across the yard. He shows bags of caps collected for rehabilitation. He tells anecdotes about various charity events and fundraisers. He gives the impression of a person full of self-acceptance. He kindly answers questions.
– I am engaged. My mother talked about my illness with my girlfriend for a long time. Also with Marlena’s boyfriend. I don’t think what will be in two, five, ten years, but it’s not that I have no dreams. My goal was to collect money for a trip to a clinic abroad and it worked! If it goes well, we’ll leave in January. After returning, we will have a long and costly rehabilitation, but I don’t worry too much. I can work, I am still very fit. I probably have it for Dad that the disease decided to hit later.
It is worse with Marlena.
– The daughter already has visible movement disorders and slow speech. Simply put, the disease has its own dynamics and this is how it goes. But it’s a young organism. Once, the doctor even said that the daughter could still give birth to children – explains Renia.
However, neither Marlena nor Piotr want born children.
“Too high a risk of passing on this terrible disease,” says the girl.
– My dad grew up in a foster family because his father could not cope with seven children after his wife died prematurely. Years later, we found out that my grandmother suffered from ataxia. She did not realize how seriously she was ill. There were times no one knew. Out of her seven children, five inherited the disease, including my father. I have a lot of cousins who also have ataxia. For a long time I could not come to terms with the fact that I was sick, but now I know that I must not hide it. In the future, we want to adopt a child with our fiancé. May only health and strength allow it.
“Once, in the hospital, a doctor asked her husband if he had any other ailments apart from the symptoms of ataxia,” says Renata. – He replied with a smile and quite clearly: Besides, I am a specimen of health! Fortunately, children have this optimism after their father. We are not contaminated or sad to the point. We try to enjoy every day, live normally. Sure I’m crying in the corners. It doesn’t always bring relief, but I wouldn’t trade my life for anything else. When a thought arises, maybe, if I were to marry someone else … then I push it away immediately! Today someone who is healthy may find himself in a more difficult situation tomorrow than we are. Therefore, I thank you for what I have and fight for what I have. For a better future for my children, when I and Wiesio are no longer there.
Tekst: Joanna Weyna Szczepańska