Oleg Tambovcev

"My biggest dream is for my brother and me to be healthy, and for all of the kids in the world who suffer from this disease to be cured.”

In addition to being brothers, Oleg and Denis Tambovtsev have one more thing in common – they both suffer from cystic fibrosis. Tambovtsev's are the only family in Kazakhstan with two kids suffering from this disease. The Help Journal has been assisting this family for over two year. Our donors and volunteers help buy antibiotics that Oleg and Denis need, raise money for their trips for treatment and necessary tests in Moscow, and send them necessary vitamins and nutritional supplements for children with cystic fibrosis that are not available in Kazakhstan.

As it happens frequently in the countries that do not have clinics and doctors specializing in cystic fibrosis, Oleg and Denis were diagnosed too late. As a result, they didn’t receive necessary treatment in early childhood, and for a while disease progressed unchecked. The older brother, Oleg, was sick since he was born. In early childhood, he was diagnosed with numerous viral respiratory infections. When he was five years old, his doctors thought he had asthma, and started treating him for it. Despite the treatments, his condition was deteriorating - by May 2009 a 9-year-old Oleg became so sick that he was bedridden, unable to sit or walk. He weighed only 26 lb, had constant shortness of breath and back pain and developed bedsores. At that point, doctors in his native Kazakhstan were unable to help him. Tatiana and Dmitry, boy’s parents, decided to seek help for their child in Ukraine. In Ukraine, the doctors finally made the correct diagnosis - cystic fibrosis.

Here is what his Mom Tatiana writes: "My child has almost died, he was not expected to survive even a couple of days. Only after three months at the hospital in Ukraine he was able to enjoy life again. Our youngest child, Denis, was diagnosed with cystic fibrosis in Ukraine at the same time. Faced with that devastating disease, we felt completely alone. Now 13 years old, Oleg cannot attend school and has to study at home as even laughing causes shortness of breath and cough. Teachers from his school visit him at home. As a mother, I can’t stand just watching my children slowly fading away. Our life now revolves around hospitals, IVs, medications. I keep hoping that I will wake up one day to find that this disease was just a bad dream and doctors will tell me that my kids will get better soon. But every hospital visit just reinforces that I know: this disease is our reality, and we can't get away from it.

Our life reminds me of a battlefield. Every time kids need to go to Moscow for tests and treatment, I contact all our local charities but no one agrees to help us even once. I have lost all hope. All doors close in front of us. And I can't even think about what happens if we stop taking the kids to Moscow for regular treatment. When Oleg gets really sick, the doctors here don't even want to see him. They have one answer for us: we don't know what to do, you have to get in touch with doctors in Moscow.

Doctors at the Department of Pulmonology of Institute of Pediatrics in Moscow, Russia are willing to treat our boys, but as the foreign citizens we have to pay for the treatment ourselves. We are already used to having to continuosly ask for help and try to convince beurocrats that the fight for our children is not futile. Unfortunately, our government has kicked us to the curb and won't help us pay for our trips to Moscow. We also can't afford the hospital stays ourselves. This is why I am writing to you and hoping for the kindness of strangers. Please help us save our children!"

And here is what Oleg wrote to us about himself: "My name is Oleg. I live in Aktobe, Kazakhstan. Our city looks better each year, there are beautiful boulevards and a President's park. There are four people in my family - mom, dad, my brother Denis and I. My brother and I are good friends with him, but sometimes we have some disagreements about who will put the toys away or who will be first to use the nebulizer. I love him very much. Our school specializes in English. I like going to school, but unfortunately I have to study at home most of the time. I am in the 5th grade now. Many of my teachers come to my home. Every year the classes get more interesting. My favorite subject is Math. I am a good student and try not to miss any lessons. Apart from school, I like computer games most of all. I like remote-controlled toys, encyclopaedias and educational computer games. I want to be a computer programmer when I grow up.

Doctors in Moscow oversee my treatment, but it is my Mom who has to manage all my daily treatments. Twice a year we have to travel to Moscow so that doctors can run all necessary tests and develop a home treatment plan for the next six months. I do my breathing treatments through a nebulizer seven times a day, three times in the morning, once in the afternoon, and three more times in the evening. I do physical therapy to keep my lungs free of congestion. I take 27 pills each day and get daily injections of Heptral IV injections in 14-day courses. Once I am finished with injections, I have to add an extra pill to 27 daily ones. My biggest dream is for my brother and me to be healthy, and for all of the kids in the world who suffer from this disease to be cured.”

Oleg loves learning and can't wait for the school year to begin. He is also dreaming of signing up for kung-fu lessons, but unfortunately doctor's won't allow it because of a high risk of a dangereous internal bleeding. In his free time, Oleg does embroidery and beadwork which he taught himself with the help of books.

Oleg is a straight A student, and he dreams of one day studying at a university abroad. First, he would of course need to graduate from school, but Oleg is full of determination. He says: "I am a good student, and English is easy for me."

Denis starts school this year. He has been getting ready for the past year, working with a speech therapist. He loves building things with his legos,and enjoys playing just like any other child. While he is doing better than his brother healthwise, he still often gets stomach aches and needs continuos tratemtns with enzymes, medications to support his heart, pulmozyme, and others.

As there are no doctors specializing in treating cystic fibrosis in Kazakhstan, Oleg and Denis are treated by specialists from Institute of Pediatrics in Moscow, Russia. While the younger brother Denis, who was diagnosed at 3, is doing quite well, Oleg's health is deteriorating rapidly. His mom Tatiana notices that walking five flights of stairs to their apartment is challenging for Oleg, and he can't get a good nights sleep because of constant cough and shortness of breath. His liver problems also often result in pain.

Tambocev family has asked many Kazakh newspapers for help in raising money for their kids’ treatment. Parents of children affected by cystic fibrosis in Moscow occasionally send them medications that are not available in Kazakhstan. Several times people of their native city Aktobe raised money to help cover the boys’ treatment. Tatiana and Dmitry also sought help from Russian charitable foundations, and Pomogi.org as well as Advita has helped them several times. Unfortunately, no foundation can cover all their necessary expenses.

As it is often the case for families with severely ill children, the boys’ Mom Tatiana is a full-time caregiver for her sons, managing their daily treatments. The family survives on a single income and children's disability payments which do not amount to much. The state provides only several medications which children with cystic fibrosis need: Pulmozime, Creon, some antibiotics and Heptral. The family has to pay for all other medications, as well as for hospital stays in Moscow out of pocket.

In April Oleg turned 13, and one of his long-time wishes came true: he got a bicycle. We ask you to continue supporting Oleg and Denis so their wishes continue coming true!

News

February 1, 2014.

As per Oleg Tambovtsev's mother Tatiana, Oleg's condition has stabilized. The remaining problem is his unstable blood pressure.
Denis is attending school and particularly enjoys studying English. Unfortunately, he has ongoing tummy aches, and he cries very often. He gets colds frequently, that means that he may need to be home-schooled.
Maria who has been sponsoring Oleg and Denis for a year now, helps the family a lot by buying and sending them to Kazakhstan high-calorie nutrition and specialized vitamins. We thank Maria dearly for her ongoing support!

We are still fundraising for Oleg and Denis upcoming trip for treatment in Moscow. This time they will require inpatient treatment that will cost approximately $5000 including train tickets. This is a very large amount for our organization, so we starting fundraising in advance.

Please, help Oleg and Denis!

December 12, 2013.Unfortunately, news are not good again. Oleg's condition remains severe despite appropriate treatment and all necessary medications.

Due to enlargement of lymphatic nods and spleen Oleg suffers from liver pain and vomiting. During his last admission he had several episodes of hypertension. It is unclear what needs to be done next. Oleg is expected for his next planned admission in May next year. Doctors start mentioning the possible need of liver transplant.

Unfortunately, there is no CT scan equipment in Oleg's native town. Oleg will need to have abdominal CT scan during his next admission in Moscow so doctors can get a better idea whether liver transplant is indicated. The main issue is that there are no liver transplants done in Kazakhstan.

Tatiana Tambovtseva writes: "I want to express my great gratitude that you responded to my request to help my children. It is incredibly heartwarming to know that in our almost cruel world there are people that are caring, attentive to problems of others, feeling strangers pain like own. I am bowing to you. Thank you very much from the bottom of my heart."

We will keep trying to help Tambovtsevs brothers to cover the medical costs.

Donations for their next trip to Moscow are greatly appreciated, especially knowing that next time, both brothers have to go. The cost of the hospital stay has recently increased, we will need to pay for Oleg's CT scan and train tickets as well. We are starting to raise the target amount of $5000 beforehand, to make sure necessary amount is raised by May.

We are asking to help Oleg and Denis with their upcoming treatment.

August 30, 2013. Thanks to the help from our donors, both boys were able to go to Moscow for tests and treatment. Unfortunately, the tests show that Oleg's health is deteriorating quickly. Once again, we need to raise money for his treatment in Moscow. This time, he will need a longer stay in the hospital as he needs IV antibiotics and extensive testing that can be only done in the hospital. The estimated cost of treatment is 93,000 Rubles, or close to $2,900. In addition, it is likely that based on the test results doctors will prescribe new medications that might not available in Kazakhstan. They also need $800 for the train tickets for Oleg and his Mom. The family hopes to be able to cover the cost of tickets themselves, they have started saving up money. But they are counting on your help to cover the other costs. We can send the break-down of the estimate in case someone would like to see it. Please, help Oleg get the treatment he needs.

July 7, 2013. We are grateful to everyone with has helped send brothers Oleg and Denis Tambovcev for check-up and treatment to Moscow this past May. Unfortunately, the tests showed that Oleg’s condition deteriorated. He has pain in his liver and needs daily treatment with inhaled antibiotic tobramycin. On April 27, Oleg turned 13 years old. He has been saving money for his dream - a bicycle - for some time, and his dream came true!

March 27, 2013. Brothers Oleg and Denis Tambovcev again need our help with paying for their planned hospitalization in cystic fibrosis clinic in Moscow. Their bill for the hospital stay and tests will be at least $2,500. Here’s what the boys’ Mom Tatiana writes: “Our life is a constant battle. We have to be in Moscow on May 23 for a planned hospital visit. Since we’ve got a confirmation from Moscow, I have been contacting our authorities as well as local charities, and no one is willing to help. I am losing hope as I see all doors closing before me. And if we can’t find the money to take our children to see the specialists, I am not sure what will happen. When Oleg is sick, the doctors in our town don’t even want to see him. They have one answer – we don’t know what to do, call Moscow…”

One of our regular donors promised one third of the needed sum, so we need to raise $1,500 for the boys. The family needs $1,000 more for the transportation but they are hoping to save enough money for the ticket by May.

Oleg is an excellent student and he wishes to study abroad once he graduates from school. He works really hard towards his dream, and tells us that he is doing very well in his English classes. We only hope he stays healthy enough to pursue all his dreams. Thanks to the specialized nutrition and vitamins that our donors were able to send to Kazakhstan, Oleg’s appetite improved and he is eating better. His little brother Denis is now working with a speech therapist and getting ready to start school in September. He is generally feeling well, except occasionally he gets stomach aches. Please, help Oleg and Denis continue getting treatment they need!

January 6, 2013 Anna from Australia sent 10,000 Rubles ($340) to Tambovcev family, and they used the money to buy medications for the boys: berodual, lasolvan, chophytol, karsil, hepabene. Oleg was treated with antibiotic Ceftazimidine, and he is feelling much better despite a poor appetite and low energy. Denis feels well, too, and is getting ready for school next year. Both boys, and especially Oleg, need vitamins, but unfortunately, they ran out of them in August. They also need ScandiShake, as they only have a three week supply left. Oleg and Denis with all of you a Merry Christmas!

December 10, 2012. Dear friends, we would like to thank all who helped pay for the treatment of Oleg and Denis Tambovcev in a Moscow clinic.

Here is what their Mom wrote us: "Thanks to you, boys got all necessary tests and treatment. As you know, when we arrived in Moscow, both boys were not doing well. Oleg had difficulty breathing, his heart was not working well, he had a high fever due to infection. Doctors started him on iv antibiotics right away, and ran all the tests. Oleg got to know other kids in the hospital and became good friends with many of them. Together they did physiotherapy, played, did crafts, talked.

Doctors also ran tests on Denis. His condition is not good but at least it's stable. He also enjoyed his hospital stay and made many new friends. He enjoyed his physiotherapy the most. The worst part for him was gastroscopy, which really scared him. I would like to express my gratitude to all people that are helping us. It makes me happy to think that even in our cruel world there are people who deeply care about our problems. As a mother, I am very thankful to all the strangers who shared our pain with us and became dear to us."

The boys' Mom also sent us the pictures of Oleg's new works.

Both brothers need SkandiShake and specialized vitamins (ADEKs) daily. If someone reading this wants to get in touch with the family and send them Skandishake and vitamins on a regular basis, please, let us know. Thank you!

June 5, 2012. We would like to thank all our donors for the help you have provided to Tambovtsev family. Oleg and Denis, together with their Mom, are back from treatment in Moscow. Unfortunately, the news is not good: condition of both boys has deteriorated. Oleg has an enlarged spleen, Denis is having problems with his pancreas, and both boys have developed liver complications. Boys must be admitted for inpatient treatment which is scheduled for November 15th. The cost of treatment for both boys is estimated at 80000 RUB. This amount is prohibitively high for the family, and we once again ask for your help to raise money for Denis and Oleg. We will need to raise 80000 RUB or 2700$ by November. We know that with your help everything is possible!

April 11, 2012. Now Oleg and his little brother Denis need our help again. Both brothers need to travel to a clinic in Moscow for the necessary tests and treatment at least once a year. As the boys are not citizens of Russia, their parents need to pay for doctors’s consultations, tests, medications and travel expenses out of pocket. In the past, Kazakh authorities occasionally partially covered those expenses. Unfortunately, this year the family is struggling to raise enough money.

A letter from Tatiana, Oleg and Denis Mom: "Even doctors can’t predict when our boys will need to be seen again. It depends entirely on our sons’ health. We do our best to manage their disease and protect them from any infections, but without regular tests and timely treatment, their condition worsens sooner or later.

Oleg is struggling with liver pain. We are doing all we can to treat it at home. He has just finished a course of treatment with Heptral, but he still has pain. While the vitamins improved Oleg's appetite, he has not gained any weight. Oleg has very short stature for his age, and weighs only 21 kg (46 lbs). It breaks my heart to watch him compare himself to his healthy classmates, all much taller and stronger than him.

Summer is the most difficult season for our youngest son, Denis. He does not tolerate heat well and struggles with sweats. He also can no longer tolerate IV infusions and as a result couldn’t be treated with Heptral. Doctors here in Kazakhstan can’t explain his adverse reactions to infusions, and we need to seek the advice from their more experienced colleagues in Moscow.

This time around we aren’t very successful in finding money for the trip to Moscow. What we have so far barely covers transportation and living expenses but we have no money to pay for the medical tests and medications. It is devastating to realize that your children's lives depend on medications and treatments that you cannot afford. When you first learn that your child is gravely ill, your world crumbles. Knowing that you are not completely alone and that there are people willing to extend a helping hand makes you feel much better. Our life now is quite difficult: we spend most of our income on medications, and the fear we feel about our children’s future is unrelenting. Any help and support gives up hope and strength to carry on and fight for their lives."

To cover the costs of outpatient tests and treatments for both brothers, 40000 Rub (or about 1350 dollars) is needed. Please, help us raise the necessary funds for the boys to get urgently needed treatment!

December 5, 2011. In his free time, Oleg enjoys embroidery and beading, which he has taught himself using books. His Mom says it's not easy for him as he is often very tired and his hands are not as steady as he would want them to be, but Oleg is very patient! Take a look at some of his works: