Mark Bondarev, 5 years old - Cystic fibrosis
Mark's outpatient medical record is more like a medical guide than a chart. All efforts of the family are aimed at combating cystic fibrosis and its complications.
Mark Bondarev, born in 16.12.2013
Diagnoses: Cystic fibrosis.
Dear all! My name is Valentina. I’m the mother of a special, most beloved child, Mark. He is 5 years old and sick with cystic fibrosis (CF), an incurable genetic disease. Because he wasn’t diagnosed until age 4.5 years, precious time was lost. Today, his medical record looks more like a medical guide than a chart. All efforts are aimed at combating CF and its complications: severe pancreatic insufficiency (pancreas doesn’t function at all), bronchiectasis in both lungs, cholestatic hepatitis, polypous rhinosinusitis (two polyp removal operations have already been performed).
We started by collecting information, communicating with doctors and with parents of other children like Mark, and getting the proper diagnosis and treatment. Daily therapy for CF is a separate issue – our life has changed dramatically. I had to give up my beloved, income-generating work, in order to devote myself to the struggle, endless maneuvers, and administration of medications. In less than a year, he has been hospitalized twice and required a lot of antibiotics.
Once given the precise diagnosis, we, unlike many parents, did not go into hysterics, but felt some relief (yes, yes, it happens!). At last, we learned the explanation for bronchitis, pneumonia, low weight, and digestive and liver problems. We realized that there was a single cause, and although it is very serious, we can and must fight it out!
No matter how depressing these ailments sound, treatment really works! We see how our child gained weight, became more resilient, and improved liver function, while polyposis entered the stage of remission and bronchitis became less frequent. We make sure that he can live an ordinary life. For Mark, the main thing is to take medicines on schedule, and to do inhalations and kinesitherapy. He carries out some procedures even with pleasure: he jumps on a trampoline, practices breathing, and other exercises.
Despite the constraints, we are a happy family! We have two of the best kids in the world! Our kids go to movies, plays, and classes. Our older son is engaged in English and Taekwondo. Mark goes to kindergarten, a theater studio, and dance class. We spend a lot of time outside. Our children have many friends and hobbies: checkers, chess, and other board games. Outwardly, Mark practically does not differ from his peers, except for thinness and pale skin color. Often, he manifests himself as a child developed beyond his years. The truth is that such children are in a hurry to live. He loves life very much, despite all difficulties and hardships. We are confident that improvements will follow. I intend to babysit his future kids!
The main thing is to help us a little because our family has exhausted all financial resources. Previously, we dealt with everything ourselves. Now we ask for your help. Mark’s treatment costs us around $400-$600 USD per month. We cannot cope alone. We do not ask to provide treatment for our son in full; we need help only to purchase certain medications, vitamins, supplements, exercise equipment, and other expensive, but very important equipment. We will be immensely grateful for any possible help!
The family lives in Kharkiv.
For more information, please contact the staff of the Happy Child Foundation.