Kuba, like many boys, is passionate about football. He cannot go crazy on the pitch - he is bothered by cystic fibrosis, but he dreams of commenting on football matches one day. What is life like for a child with cystic fibrosis?
How did it startcystic fibrosisin Kuby? The firstsymptoms ofappeared when Jakub was only 2 weeks old - he began to cough strangely. A hospital and an antibiotic were needed. The treatment lasted a month. The baby's condition improved so much that the mother hoped to take him home. And suddenly another very serious infection developed. Cuba's life was hanging in the balance. He was taken to the provincial hospital in Włocławek. Intensive treatment worked, but otitis media became tangled up. A trace of him remained - partial paralysis of the face. Despite his difficult condition, Kuba had a good appetite. He ate a lot, but he was skinny because he was constantly suffering from diarrhea. Various zoonoses, malabsorption disorders, and gastrointestinal defects were suspected. Despite the lack of diagnosis, doctors decided to give the baby pancreatic enzymes. This saved the boy from an anus prolapse, which is often the case in young children with endless diarrhea.
There was cry, there was anger, but not resignation
- After many adventures, we ended up at the Institute of Mother and Child in Warsaw - says Anna Sławianowska-Morawiec, Kuba's mother. - The son was then 6 months old. I thought we would spend a few days there, and we stayed for half a year. Cystic fibrosis - that was the diagnosis. I didn't know what that meant. The doctor was explaining, but I was too scared to understand anything. It was a long time for me to understand how serious this disease was. Anna quit her job to look after Kuba. She took advantage of the Act in force in 1998: mothers of chronically ill children could take an early, permanent retirement if they had 20 years of work experience. Anna did. - At the same time, I was left alone with my son. A huge responsibility fell on me - he says. - I had to take care of the money for our livelihood and make difficult decisions regarding the treatment of Cuba. It wasn't easy. Sometimes I cried, I was angry with fate, but I also knew that if I didn't collect myself, we would both be lost. I waited for Cuba for six years of marriage, so I couldn't give up.
ImportantCystic fibrosis: disease onwhole life
Cystic fibrosis is an incurable systemic genetic disease. It attacks the respiratory and digestive systems the most. Thick, sticky mucus builds up in the bronchi and lungs, making it difficult to breathe. In addition, it is an excellent substrate for the development of respiratory diseases and a gradual reduction in their efficiency. The disease interferes with the secretion of pancreatic enzymes, and as a result, nutrients are not absorbed from food. Patients must take pancreatic enzymes and supplement their diet with nutrients to stay alive. Life expectancy of patients in Europe is 40 years. In Poland, it is lower, which results from the limited access to comprehensive specialist care.
Cystic fibrosis: drugs, school, colleagues, dreams
Kuba is a tall, thin boy. His eyes sparkle cheekily, but there is also a seriousness in them. He is now in high school. It has an individual course of study, but classes only take place at school. The boy is very happy about it because he likes teachers and colleagues. He's good at science, intends to go to college and become a sports commentator. He told his new colleagues immediately what he was sick of. It was a bold step, because you had to reckon with the rejection of your peers. His colleagues appreciated his honesty and their relations are good. Cuba starts each day at 5.30 am. First, the boy takes a mucolytic - a drug that will prepare him for inhalation. Later, drainage of the respiratory tract and another inhalation. Then you need to take an antibiotic, rinse your nose and put in special drops. And finally at 7 you can sit down to breakfast. - When I was younger, I was terribly angry that instead of kicking a ball, I had to sit at home on those boring inhalations - says Kuba. - It is different now, because I know that without them I will not be able to function. I also understand that the sooner I do all the treatments, the sooner I will go out to my colleagues. I will be able to run after the ball and I will be less tired. I have nice colleagues, friends and I like going to school. We sometimes talk about my illness, but it's a boring topic. We prefer to talk about football and sports. I'm sick. Nothing will change that, but I also have plans, dreams and I'm going to make them come true.
Cystic fibrosis: 14,000 tablets in a year
Kuba has undergone 16 surgeries and is preparing for another one, which is to remove the regrowth polyps in his sinuses and nose. - When I have to sign another consent for surgery, my hand is shaking - confesses Ms Anna. - It's an unimaginable responsibility. I am always worried that something might not happen. Every time I wait outside the operating room, this terrible burden drops off me when I can see my son. Daily worries are there too.I have nothing to worry about. The monthly cost of treating Cuba is 3,000. zloty. This is the cost of antibiotics, steroids and special nutrients in Poland for people suffering from cystic fibrosis. The daily diet is also extremely important. And Kuba is still burdened with osteoporosis, he has gastroesophageal reflux. Every month Anna wonders if she can get the money for all of this. - Daily struggle with the disease is not pleasant - says Kuba. - They often interfere with my activities, but I have no choice but to do it all. I won't get rid of cystic fibrosis, but I won't. The boy smiles mischievously and adds: - There are also advantages to this disease. My parents do not allow my friends to eat chips or hamburgers, and I can afford them with impunity. During the year I swallow 14,000 different pills and maybe I will report them to the record book.
The boy grew into a man
Kuba is growing up and wants to be more and more independent. He wants to go to school alone, but his mother is afraid that something bad will happen to him without her care. - I have to trust him, let him come from under my wings - he says. - It's probably not easy for every mom. No, I am not protecting Cuba from the world. I never concealed his illness. I also spoke to him openly. When he was little, I didn't enjoy real motherhood because I had to fight for my son's life. Today I am surprised to find that the boy has grown into a man. And although he is an only child, he is not selfish, he is willing to help others, he is involved in the affairs of his peers, he is sensitive and affectionate. In junior high school, he was a volunteer and helped younger children learn. He is well-liked, which also gives me a lot of satisfaction. About his mother Kuba says briefly: - He is out of this world. I don't know how she does it. He keeps an eye on my medications, treatments, remembers about everything, cares about everything. She has been struggling with my disease for so many years and is always so independent and resourceful. He smiles, he doesn't complain. As soon as I can, I take off her various responsibilities. I would like my mother to be able to go somewhere, at least for a week, so that she would not have to take care of me, so that she could rest and forget about cystic fibrosis for a while.
Where to go for helpMore information about the disease and methods of its treatment can be found at: www.mukowiscydoza.pl. People interested in the problems of cystic fibrosis can contact the Foundation for Help for Families and People with Cystic Fibrosis Matio: [email protected] or by phone 12 292 31 80. You can help Cuba through the Matio Foundation. It is enough to mark - for Jakub Morawiec.
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