The life of children with cystic fibrosis is special – from their very birth and until the moment they leave this world…
Their struggle for life begins with their first breath. Most of these special children have to spend the first half a year of their life in intensive care units. Some of these little warriors fight intestinal obstruction, some pneumonia, bronchitis, or some sort of unusual rare diagnosis.
Children with cystic fibrosis have a chance to start a more or less normal life as soon as they are diagnosed. This life has its peculiarities, limits, a lot of medications but it is still life where each breath is free of severe pain and hospitals every three-four weeks.
We gently call these children “cystic fibrosis sweeties”. They are so fragile, skinny and gifted – everyone without exception. It sometimes seems to me that their poor metabolism is greatly compensated by their breathtaking creative skills. These children are often active sportsmen. They do not pity themselves and do everything they can to live a long life. The bitter truth that most of them are destined to live a short life inspires them to live their life to the fullest. They understand the importance of every moment.
These special children often behave more adult-like. When you communicate with these children without knowing their diagnosis, you can’t help wondering where they gained so much wisdom and experience from. I wish these wise kids could better have a normal childhood with foolish tricks and jokes. However, they are in a great hurry. These kids are afraid of missing something. They eagerly learn the world around and try new roles and hobbies.
Children with cystic fibrosis dream and set many goals. They are often much more ambitious than their healthy peers. Their secret is that they know the value of each day and cherish every breath they take.
Children with cystic fibrosis have to think about more serious things than ordinary joys and fun. They have to take medicine every day. They are fully aware of their strict plan of medications and inhalations. They are all keen to know whether their vital medications are available for them in the near future.
The life of these sweeties is often stressful, full of pills, hospitals, inhalations and an unanswered rhetorical question “How long is left?”
I am blessed to know these little warriors. I am proud to be a small part of their smiles and achievements. They instead teach me to cherish little joys, love life and take it the way it is.
If it seems to you that your life has lost its colours and you are a loser without any sense and goals – come and talk to these ordinary but so special children.
You can also join our cystic fibrosis project and give many Ukrainian children a chance to live a long and happy life!
P.S. There is a transcription of the video message from the parents of Viktoria Butenko, a lovely angel with cystic fibrosis who has recently passed away:
“We are parents of Viktoria Butenko. My name’s Alina. My name’s Sasha. Our daughter was thirteen years old when cystic fibrosis took her away from us. Our Viktoria was in love with life. She was a very strong little girl. She loved to draw, sing and perform on stage, do some needlework. She cherished friendship very much. Our sweetie liked spicy food. She hated conflicts. Dropping bottles and inhalations drove her to despair. She dreamt of meeting Hector Jimenez-Bravo, a Colombian chef and becoming a world-famous cook. Every time she went on stage, she dreamt that one day she would become a real star, present people her talent, and make them happy. Her greatest dream was to breathe in deeply and forget about oxygen masks. We feel lost and empty. We can hardly believe that our girl is not with us anymore. We would really like to ask you to support children with cystic fibrosis. Please, give these children and their parents a chance to spend more time together. Children with cystic fibrosis are talented, kind and gentle. The society and their families need these children. We need them. Help them to survive, please!
