Mariia: mother, wife... patient

"I am a cheerful, active person who loves life very much. But my illness is progressing... I am happy that I have a family – my little girl and my husband – and a job I love. Often, people don't give a second thought to how wonderful it is to be able to work, travel, or go about their daily tasks without having to think about medications, medical equipment, nebulizer treatments, and hospital admissions," this is how Masha's letter begins, and she truly knows the value of every day. Ever since she was born, Masha has lived with a severe genetic disorder – cystic fibrosis. There are very few adults with cystic fibrosis in our country; every day of her life is a miracle. 

And at the same time, each day of her life is valuable in the most down-to-earth sense it is expensive financially. And today, Masha needs our help. Cystic fibrosis is a genetic disorder which results in all the secretions being more tenacious than normal. That would seem to be a minor thing, but it affects all the essential organs. The tenacious sputum is much harder to cough up and clogs up the lungs, making breathing difficult, the food does not get absorbed unless the person takes digestive enzymes, the liver and the heart also get damaged...

A person born with cystic fibrosis has to, every day of their life, take a number of medications, do nebulizer treatments, and do an entire set of special procedures and exercises. If you try to slack off and skip even a small part of all this, you won't be able to breathe. If you don't find money to pay for all of the necessary medications and equipment – you won't be able to breathe. Cystic fibrosis is a very difficult disorder to manage. Nonetheless, one can learn to manage it and to live with it. Masha and her family can take care of most of her needs, but right now they need our support – they need help to buy some equipment and supplies.

"I really need a portable nebulizer. If I want to go somewhere with my family, or even to spend an evening away from the house, it is very difficult – I have to rush home to do the evening nebulizer treatment. And even at work, when I spend all day without getting a nebulizer treatment, I am having trouble breathing by lunchtime. And I very much want to live a full life with my family, for as long as possible."

Name: Mogylevska Mariia, 26.04.1982

City: Ternivka, Dnipro region

Diagnosis: cystic fibrosis