Serezha from Makeevka (Donetsk region, Ukraine)
is a happy and inquisitive toddler who enjoys playing with his blocks and toy tool set. Most of all, he loves playing
on a swing set. Unfortunately, Serezha doesn’t get to go to a playground often, as he spends much time in the hospital.
Even when he is feeling better, he has to be very careful to avoid respiratory infections as they are very dangerous for
children with the disease Serezha has – cystic fibrosis.
Serezha was born on February 2, 2008. Soon after his parents brought him home from the
hospital, they started suspecting something was not usual about their baby boy: he had constant problems with
digestion, gained weight very slowly despite good appetite, had difficulty sleeping because of frequent
tummy aches. Mom Oksana recalls that when she kissed him she could always taste the salt on his skin.
Unfortunately, Serezha’s pediatrician dismissed her concerns and assured her that her little boy would
just grow out of it. He didn’t. At six months of age, he developed cough that didn’t improve with time.
Serezha was hospitalized in Regional Children’s Hospital, where the doctors ran genetic tests and diagnosed
him with cystic fibrosis.
Serezha has a severe form of the desease, his lungs as well as the pancreas, liver and
intestines are affected. This past summer, he spent several months in the hospital due to a lung infection,
and presently his doctors are struggling to bring intestinal symptoms under control.
To grow, maintain good health and ward off life-threatening lung infections, Serezha needs many
different medications, including enzymes to help him digest food and absorb nutrients, mucolytics to loosen mucus in
his lungs, medication called Ursofalk to treat liver disease caused by cystic fibrosis, and expensive antibiotics.
He also needs medical equipment, such as a nebulizer to administer aerosolized antibiotics and mucolytics directly to
his lungs, pulse oximeter to monitor how well his lungs are working, The annual cost of medications alone adds up
to several thousands of dollars, not including the costs of physiotherapy, specialized vitamins and medical equipment.
Some medications, like mucolitic Pulmozyme that works well for Serezha, are not available in Ukraine and Serezha’s
Mom had to ask parents of cystic fibrosis patients from neighboring Russia to purchase them and ship to Donetsk.
When Serezha is hospitalized, his parents have to pay for the medications and most diagnostic procedures.
Unfortunately, the state is providing only minimal care for cystic fibrosis patients. From all
the medications, only the enzyme Creon is covered but it is often only available for a full price in commercial drug stores.
The amount of monthly disability payments Serezha’s parents are entitled to barely covers two packages of Ursofalk.
Serezha’s Mom Oksana had to leave her job as an esthetician to care for her son. She is a real fighter and is doing
all she possible can to keep him healthy. She is constantly looking for information on available treatments, and is
currently working on organizing a parent support group for parents of young cystic fibrosis patients in her native Donetsk region.
Despite Serezha’s Dad working several jobs to support his family, their financial situation is dire.
They live in a room in a house without indoor plumbing shared by several families. Almost all the money goes to pay
for Serezha’s treatment and even then he often doesn’t get all required medications. Presently, Serezha needs $250 to
purchase a new nebulizer as the one he is using is not functioning properly, $120 for pulse oximeter. He also needs
specialized vitamins to ensure he is receiving proper nutrition despite difficulty digesting food. In the nearest future,
Serezha will likely need another course of antibiotics.
We would like to help this beautiful young boy get appropriate health care and live a long a healthy life.
We need help from all of you to do it. Please, join us!
News
June 20, 2010. Thanks to your continued support, we were able to purchase necessary medical equipment, including a nebulizer and a pulse oximeter
for Serezha. Serezha's parents, and all of us at Help Journal thank you for your generosity.
July 25, 2010. Unfortunately for many cystic fibrosis patients in Ukraine, there are presently no specialized cystic fibrosis clinics
in this country. On recomendation of Serezha's doctor as well as the US pediatritian that consults the Help Journal, his parents sought admission to the nearest
clinic that specializes in treating children with CF in order to address his recurring health problems and establish a course of treatment for the nearest future.
The good news is that inpatient CF clinic in Moscow Institute of Pulmonology has agreed to admit him in September. The bad news is that since Serezha is a foreign national,
his family will have to pay for his stay at the hospital and cover the costs of tests and medications. While we won't know the exact amount needed, the estimate is around $2000.
Again, we ask for your help in raising funds for Serezha's treatment.
