"He is my little hero, the bravest child I know": Marta and Igor's story

Igor was born two minutes after his twin brother Wiktor. At first glance, there is nothing different about Igor. He is seven years old, and he is a very cheerful child. He is bright, always asking questions, always smiling. But this little boy is fighting something invisible all the time. Something he’s been fighting since his first days in the world: cystic fibrosis.

We had to quickly learn to live with CF

The twins were fifteen days old when the doctor knocked on the door. A few days earlier, we had received Igor’s heel prick test results, but I had no idea what it meant.

We had to quickly learn to live with a disease that would stay with us forever. When the doctor was telling us what cystic fibrosis is, I had to stop him and ask my midwife to translate. I’d only been in England for two years; the medical language was still foreign to me. She told me what it meant, and I hugged Igor and cried. 

The next few days were all a blur. I didn’t sleep. I cried. I checked on Igor constantly. I started reading about the condition, its complications… about everything we would face as parents of a child with cystic fibrosis. 

I struggled to understand information about the disease in English, so I turned to Polish information. However, I quickly regretted doing so; in Poland, the future for children with CF is a lot less positive than it is in the UK. When I told my CF team what I had read, they told me not to look at this information anymore but to turn to Cystic Fibrosis Trust. Sometimes I had trouble understanding all the words, but with a little help from Google Translate, things became clear.

Psychological support is vital

Psychological support is vital in the early days of a CF diagnosis. Learning your child has a life-limiting, incurable condition, you start to ask questions... will my child have a chance to go to college, find a dream job, or start a family of their own? Our CF team supported us; I know that in Poland, this support is a lot more difficult to come by. My husband Marcin worked all hours during the week and was away from home a lot, so I stopped working during the week to support Igor and instead began working on weekends. Our relationship suffered because we never saw each other. My family were back in Poland; I had nobody to lean on. 

We struggled a lot with awareness of CF. When my family first learned about Igor’s CF, they found it hard to understand. If I didn’t let him play in muddy puddles because I was worried about infection, my sister thought I was exaggerating. Their children are healthy. Of course, they worry about them, but they don’t understand. I think only other parents going through the same thing can understand me.

My routine keeps things going

I was very worried in the early days; I cleaned all the time, scared that our house would have bacteria in it that could harm Igor. But over time, I’ve developed a routine. I used to want to go back to Poland, so my children would know their roots. But the treatment is so different over there that I’m not going anywhere, for Igor’s sake. After eight years, this is my home; my job is here, my friends. Even when we go to Poland on holiday, after a few days, I miss England and my routine. 

I try not to plan anything too much. I check things thoroughly and make sure Igor has everything he needs, but I don’t want to keep him in a box. He now knows how it feels to get his hands in the mud. We live in the here and now. After all, you only have one childhood. I’m very glad Igor has a brother. They spend time together, have fun, and argue as all brothers do.

I have a great team at the hospital. The language barrier has lessened a lot, but sometimes I have to ask the same question several times or ask them to use simpler words. But they always help make sure I have understood. They are always there when I need them. I am so grateful for all the care we are surrounded by, even the smallest things help. If it wasn’t for all these people, it would be difficult for me to do even the tiniest things, like filling in a form.

At primary school, Igor has a wonderful class and teachers. He has many friends and is a very popular child. He is curious about the world and himself. He says he’s just like everyone else but has “65 roses”. The class all know; at birthday parties, before they start to eat, they ask if he has taken his Creon. It’s so touching that it brings tears to my eyes. 

It's not easy – but my children are so wise, loving and brave

Every day, we wake up with new perspectives. It’s not easy; along with everything CF brings, Wiktor has suspected autism, and he also needs my attention. Sometimes I want to go for a long walk alone to clear my head, but it’s not always possible because they are always with me. From living a carefree life, I became a mother, the mother of child with CF. But it’s made me appreciate the smallest of details. 

He is my little hero, the bravest child I know. Once, I asked him what his biggest dream is, and he replied that he would like to be healthy so that he can take care of me when I am old. I've always been emotional, but I've never been able to show my feelings. Maybe it's because I come from a large family and haven't always heard the words "I love you. You are important". I promised myself that when I became a mother, I would always talk about it, so today, when you ask my sons who they are, they reply that they are wise, loving and brave. I am the same for them.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives – and we won’t stop until everyone can live without limits imposed by CF.

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.

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