Serezha Sukhodubov

Serezha's Story

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 working on organizing a parent support group for parents of young cystic fibrosis patients in her native Donetsk region. As there are no cystic fibrosis clinic where he lives, he needs to travel to a specialized hospital in Moscow, Russia at least every six months in order for the doctors there to run necessary tests, treat infections and develop a treatment plan that Serezha's pediatricians in his home city follow for the next six months. He is not a Russian citizen, and his family needs to cover the cost of each hospitalization that runs between $2000 and $3000 depending on particular diagnostic and treatment procedures that his doctors prescribe.

Presently, Serezha's Mom is raising him alone. Despite help from her sister's family and the family of Serezha’s Dad, their financial situation is dire, and they cannot afford the cost of Serezha's hospitalizations in Russia and his medications.

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

July 7, 2013. Thanks to everyone, who helped Serezha Sukhodubov! Thanks to your help, Serezha was treated in Moscow in May this year. Straight after the course of treatment, family friends invited Serezha and his Mum to the retreat in the forest. This was important respite after gruelling hospital days for Serezha and a great opportunity for him to breath really fresh air, which is very important for any cyclic fibrosis patient.

Serezha lost a bit of weight during his hospital stay, but already managed to put the weight back. His Mum says that he feels great at the moment. Serezha continues treatment with inhaled antibiotics at home.

Antibiotics to continue treatment at home were provided in the Moscow clinic. Volunteers from charitable group "Kislorod" ("Oxygen") got and delivered for Serezha Pulmosim, Fluimusil, Creon, ACC, vitamins - all the medications necessary to support breathing and digestion in a child with cystic fibrosis.

During his recent follow-up admission in Moscow Serezha was diagnosed with developing complications of his condition, so the treatment was commenced straight away.

His medication regimen was corrected and adjusted to his current condition. Serezha's Mum thanks everyone who provided help for Serezha.

The last bit that is left behind is the inhaler (nebuliser). We need to raise $400 to buy Serezha inhaler to continue his treatment.

March 27, 2013. Dear friends, once again we urgently need to raise funds to pay for a hospitalization in specialized clinic in Moscow for Serezha Sukhodubov.

Serezha’s condition has been stable due to regular trips to a cystic fibrosis clinic in Moscow Children’s Health Center. Unfortunately, doctors in a town where Serezha lives lack knowledge of cystic fibrosis and experience in modern treatment protocols. As his Mom Oksana told us, at his recent check-up in a local hospital a chief pediatrician admitted that she did not know that children like Serezha often have difficulty breathing and gastro-intestinal problems. Also, Serezha is not getting almost any necessary medications in his home town. Serezha’s Mom is constantly writing to the health department trying to get the medications that Serezha is supposed to be getting for free. In the meanwhile, she has to pay for all medications, including Creon, antibiotics and medications for Serezha’s liver disease.

Now it is time for another trip to Moscow, to have all necessary tests and treatment course with IV antibiotics. It is vitally important to catch any complications before they wreak havoc on Serezha’s health. His Mom is asking for help in paying for the hospital stay, medications and specialized nutrition. Unfortunately, the cost of a hospital stay has recently increased, and now we need to raise around $3,000. Please, help Serezha!

December 10, 2012.Good news from Serezha Sukhodubov. His Mom Oksana writes: "We are doing well. Serezha hasn't been sick all summer, and feels well after his last hospital stay in Moscow. We were also able to get Pulmozyme for free. We spent this past summer in the village, staying with my parents. At first, I was apprehensive about going there, as there is no hospital nearby and no indoor plumbing. But the fresh air did wonders for Serezha. The air quality is horrible where we live, as there are coal mines and plants all around. So Serezha is doing really well now, deleloping just like other kids his age. Thank you for all your help and for making it possible to get regular treatment in Moscow. I don't know what we would be doing without it!"

We are looking for a sponsor for Serezha, who would be willing to buy and send him SkandiShake and specialize vitamins once in a few months. Please, contact us if you would like to do it. Thank you!

March 8, 2012. Once again, Serezha Sukhodubov needs to travel to Moscow for his in-patient treatment. His admission is scheduled for April 18th, and it will cost $2600 USD. Serezha is doing not too bad overall but the frequency of acute infections has increased and he needs to be once again evaluated and treated by specialists. Please, help Serezha to stay well!

September 19, 2011. In the past few months, Serezha has suffered several bouts of lung infection as a result of the respiratory viral infections. Fortunately, the family still has all the necessary medications from their last trip to Moscow, and it has so far been possible to successfully treat those infections at home, under the guidance of the doctors from Moscow. Daily physiotherapy with Mom helps Serezha feel well. Serezha is growing up a happy and active little boy, and he sends his greetings to everyone in a short video.

Serezha’s doctors believe will not need to return to Moscow clinic this fall unless his condition worsens. During his last hospitalization, they ran all the necessary tests and developed a treatment plan that his Mom and paediatricians in Ukraine can follow until the next visit. Serezha will need to go to a regional children’s hospital in Donetsk to get the bacterial culture tests. Serezha’s Mom will use the funds remaining from their trip to Moscow clinic to pay for this planned hospitalization in the regional children’s hospital and for Serezha’s medications for the rest of the year. Recently, we have also sent Serezha a package with vitamins Aquadeks and nutritional supplement Scandishake. We are grateful to everyone who continues to support Serezha.

March 31, 2011. Serezha suffered several bouts of severe lung infections over the course of the past winter, and therefore it was really important for him to come back to CF clinic in Moscow for tests and treatment this spring. Thanks to generosity of the Help Journal donors, we were able to pay for his treatment, as well as for travel for Serezha and his Mom, Oksana. Serezha is in Moscow since the last week, and will likely go back home next week.

He has been treated by IV antibiotics, and right now his doctors are satisfied with his lung function. Unfortunately, the disease is starting to take a toll on his heart - Serezha is developing a common complication of cystic fibrosis, pulmonary heart disease. To help control it, Serezha's doctors have prescribed several heart medications that he will have to take while he is at home in Ukraine. They have also prescribed antibiotic fluomycin to combat lung infections, and adjusted the dozes of other medications he is taking daily. Please, help us cover the costs of those medications.

As maintaining healthy weight is a challenge for Serezha but is necessary for his overall health, the doctors are recommending that he continue taking nutritional supplement ScandiShake daily. Please, if you or someone you know is traveling to Ukraine from US or Canada, we would greatly appreciate it if you took at least some ScandiShake with you for Serezha and other Ukrainian children suffering form cystic fibrosis. It is not currently available in Ukraine but can be easily purchased without a prescription in North America. Please, let us know and we will be happy to order it and have it shipped to your address.

Serezha's Mom Oksana tells us that despite all the IV treatments and other procedures this brave little boy undergoes, he is doing great and actually enjoys his time in the hospitaal - he has made many new friends among doctors, nurses, volunteers and other patients. He is also enjoying his brand new remote-controled red Jeep!

September 15, 2010. Since September 2, Serezha has been hospitalized in Department of Pulmonology of Moscow Institute of Pediatrics. Doctors are running various tests in order to determine the best course of treatment for him. We thank all of our donors who made it possible for the Help Journal to pay for his hospital stay and for transportation expenses for Serezha and his Mom.

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.

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.