Patient Updates

August 22, 2011.The Help Journal purchased a wheelchair for Sasha Stashenko, and in May the family has already received it. We would like to thank all of our donors for their generous contributions. This new wheelchair will tremendously improve the quality of life for Sasha and her family, and will make it easier for Sasha’s Mom to take her daughter that to a clinic in Moscow for assessment and treatment.

August 20, 2011. We would like to thank everyone who helped raise money for a portable oxygen concentrator for Grisha Yakunin. Our volunteer Svetlana Kolesnik and her friend Stas delivered it to Grisha this past June. The device will increase Grisha’s quality of life tremendously: he will now be able to go outside, enjoys many of his favorite activities such as bowling, and even go for a short vacation with his parents this summer.

Svetlana had a chance to spend some time with Grisha and his family. Here’s what she writes: “The concentrator arrived shortly before my family was to leave for this trip. It is quite small in size. It fits into a carry-on but it was to make a big difference in Grisha's life. My friend and classmate, Stas, and I were able to deliver the concentrator a week after my arrival. Stas is also a strong supporter of many of my charity projects. He is also my tireless driver, as I don't have a car in Saint Petersburg which limits somewhat my traveling. I met Grisha, his mom Liudmila and his dad Mikhail. They are very modest and friendly people, and it was a pleasure to spend an hour in their home drinking tea with wild strawberry - what a treat for me!

Grisha preferred his pictures to be taken from the side so this is how we all looked on that day. I also took a picture of Grisha's creations. He is very patient and enjoys making them.

The family is very grateful for the possibility of an outdoor activity for Grisha, even though one of the first activities with this concentrator was a trip to the hospital. But this is life and it goes on. A small vacation trip is also planned and I very much hope it happens before the summer ends.”

Here is an excerpt from a letter Grisha's mom Liudmila wrote to us: "…Yesterday Svetlana brought the new concentrator to us. It is so compact and light! This is a dream come true! Thank you to everybody! I am so happy, I can’t stop smiling! From the bottom of my heart, I’d like to send wishes of joy and happiness to everybody. Our fight against this disease goes on. In the darkest times, God sends us a person whom we never met and who shouldn't care for us even a bit, and a miracle happens - that person treats me as his own relative and friend. I wouldn’t believe it was even possible if it hadn’t happened to me. And this way I get to know the people I call saints. Because of them Grisha is with me. Svetlana has also brought Grisha lots of gifts, and he is now in a much better mood. Please give our thanks to everybody. Liudmila Yakunina."

April 22, 2011. Zhenya Reshetnikov and his Mom are back home after another course of treatment in Moscow. There is bad news: in Moscow, Zhenya was diagnosed with epilepsy, and now he has to take anticonvulsive drugs to control the seizures which, while not severe, still influenced his condition significantly. We hope the treatment will help Zhenya feel better. Zhenya's mother Valeriya continutes to try and convince the government to cover the necessary medications for Zhenia. In the meanwhile, she will use remaining from the funds raised for Zhenya’s hospitalization to purchase necessary medicines. We have good news as well: Zhenya's cystic fibrosis is stable, he has even gained some weight while in the hospital.To all of you, who made Zhenya’s trip to Moscow for tests and treatment possible – thank you!

April 7, 2011 Eugene and his Mom Valeria arrived in Moscow on April 4 for the next round of tests and treatment in specialized cystic fibrosis clinic. Valeria writes: "It took us three days to get to Moscow. Despite Eugene getting ill right before we had to leave, we had a rather good trip. When we arrived, Eugene ws so tired he slept for the whole day. Now we have finally settled, and Eugene is undergoing necessary test and getting treated. Some of the test results, including the bacterial culture test that is necessary to select appropriate antibiotics, are not known yet. In general, Eugene's condition has been rather stable which is good news for the kids with cystic fibrosis. What's bad is that he has lost several kilograms in the past few months due to illnesses, and it is always a struggle to gain the weight back and keep it on. But we are hopeful that after the current round of treatment he'll be able to put on some weight.

While we are waiting for the test results, Eugene is really enjoying playing with other kids here. At home, he mostly stays home and doesn't have too many chances to make friends. Also, next week he will be seen by a neurologist. Eugene's is happy to tell everyone here the poems he has learnt, which is a huge improvement for him - before, he really struggled with memory, and now he can memorize long poems. And he has been showing off his dancing to the nurses here in the hospital. We are very grateful to everyone who is helping our son get the necessary treatment, and wish all of you the best. Thank you!"

We'd like to thank everyone who has contributed to the Help Journal and helped Eugene continue to receive the treatment that he needs to stay healthy and grow. Please, continue to support this wonderful little boy!

April 6, 2011. Angelina and Kristina arrived in the clinic in Truskavets last week. Their Mom Alena writes: "Girls are undergoing rehabilitation therapy. They are both working very hard in physical therapy and and enjoying it very much. Both of them show significant improvements in the muscle tone. Angelina is now able to flex her arms, and her back muscles are getting stronger. And Kristina is almost ready to take first steps without a walker - she just needs to overcome her fear and let go. With four more days to go, we are hopeful that we will see even more improvements, which will become even more apparents when the girls are back home and rested. We are all very thankful to everyone who helped make this trip a reality!"

We would like to thank everyone who donated and made it possible for us to cover this round of treatment for Angelina and Kristina. Thanks to you, the girls are one step closer to living their dream of walking to school next year! Please, continue supporting them. The girls are working very hard but they still have a long road ahead of them.

March 31, 2011. Serezha Sukhodubov 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.

February 22, 2011. Both Serezha Sukhodubov and Eugene Reshetnikov need to come back to Moscow to Institute of Pediatrics this spring for the next course of treatment and tests necessary to assess their condition and adjust the doses of the medications they use daily. Unfortunately, both boys suffered through several severe bout of respiratory infections over this winter. Eugene's parents have joined other parents of Kazakh children affected by cystic fibrosis and formed a parent organization with the goal of improving standards of care for the cystic fibrosis patients in their country. You can read about their efforts in the News section of Eugene's page. However, it will take time before their hard work brings about the necessary changes, and Eugene and other children like him can't wait. Eugene's visit to Moscow clinic is scheduled for April 4, 2011, and we are asking for your help in raising the necessary funds to cover the costs of hospitalization.

Like Eugene, Serezha needs to travel to Moscow in April 2011 as well. Unfortunately, Serezha's family situation has changed and his Mom is now raising him alone, making finding money for his treatment so much more difficult. The cost of his hospitalization for Serezha will likely be over $2000, and we are asking all of our donors to support this little boy once again.

Scheduled trip to a specialized cerebral palsy clinic in Truskavets, Ukraine for twins Angelina and Kristina Fedorov is coming up very soon, in the end of March. While a portion of the funds necessary to pay for this course of treatment has been already raised thanks to many donors all over the world, we would like to ask you to help us raise the remaining portion, or about $4000.

February 19, 2011. This winter has been difficult for Eugene Reshetnikov - he suffered through several severe resperatory infections, and wasn't able to attend pre-school. He misses playing with friends and is hoping to return to classes this spring. His doctors in Moscow want to see him back in the clinic for another course of treatment and tests on April 4, 2011. Eugene's family is relying on all of us to raise enough money to pay for his next hospital stay.

In the meanwhile, Eugene's parents have joined forces with several other families affected by cystic fibrosis, and have registered a parent organization "Disabled children with cystic fibrosis". Recently, Kazakh medical news internet portal has published an article about the newly formed organization. The goal of these parents is to lobby the government of Kazakhstan to adopt a national program for providing children and adults suffering from cystic fibrosis with necessary medications. Currently, many of the medications used treat symptoms of cystic fibrosis, such as Pulmozyme and many antibiotics are not even approved for use by Kazakh ministry of health, and therefore are impossible to purchase in the country. Unfortunately, financial difficulties are not the only problem facing families of cystic fibrosis patients in Kazakhstan. Many affected children are undiagnozed, or diagozed too late. The ones who do get the official diagnosis often find themselves completely isolated: as Eugene's Mom Valeria told us, for the past three years they have been asking the officials at Institute of Pediatrics to help parents of affected children meet each other and form a support group, but their requestes have been denied. Only after publication of the information about Eugene online they were contacted by many other families in their country who found themselves in the same circumstances. Unfortunately, many of the children are not getting treated - instead of antibiotics and other inhaled medications, their pediatricians who are not trained in the modern treatment protocols are prescribing herbal remedies to combat the respiratory symptoms.

If you are able and willing to help Valeria and other parents of Kazakh children suffering from cystic fibrosis with creating a site for their organization and spreading the word about it, or you would like to offer them support in any other way, please, write to us at contact@helpjournal.org and we will help you get in touch with them.

September 15, 2010. Since September 2, Serezha Sukhodubov has been hospitalized in Pulmonology Department 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.

December 22, 2010. Thanks to your support, several children including Eugene Reshetnikov and Sergey Sukhobudov received the necessary treatment for cystic fibrosis in 2010. Both Sergey and Eugene were able to come to Moscow to receive treatment that is not available in their home countries. We are happy to tell you that they are doing much better and have enough medical supplies to last them until they come back to Moscow in March. We also raised funds to purchase a wheelchair, a standing frame and a bathing appliance for Katya Samokhina, who has cerebral palsy. And last but surely not least – this year we provided more than 30 children with Scandishake nutritional supplements! We couldn’t do any of it without your help!

December 20, 2010. We are now raising money for twin sisters Angelina and Kristina, who have cerebral palsy and need rehabilitation treatment in a specialized clinic. You can give the twins a Christmas present right now!

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 Sukhodubov. Serezha's parents, and all of us at Help Journal thank you for your generosity.

March 15, 2010. With your help, we have raised enough money to purchase a wheelchair, a standing frame and a bathing appliance for Katya Samokhina. We will keep you updated on the girl's progress. Thank you for your generosity!

February 4, 2010. Nikita Polischuk died today in the Kiev Children Hospital in Ukraine where he has spent the past several months due to a lung infection. Sadly, the complications were too sever for Nikita to overcome. Nikita's mother has lost her only son.

For the past year, Help Journal has been raising money for Nikita's treatment. Unfortunately, when we started helping Nikita, his disease has already progressed too far, and the damage to the lungs and heart was irreversible. For most of his life, Nikita didn't have adequate treatment and medication management for his disease, just like thousands of other children and adults with cystic fibrosis in Russia and Ukraine.

Nikita didn't even live to be 16 years old. However, in the past year, thanks to your help, Nikita's condition was stabilized, and he was able to spend several months at home with his Mom. He found many new friends, and received letters of support from overseas. We greatly appreciate your help for Nikita.

Just several days before he died, Nikita made a video where he thanked everyone for their help. Please watch this short video, it was made for all of you.

 

January 10, 2010. Alesha Levantuev passed away today. His condition had been extremely serious for the last two months, and yet Alesha continued to fight despite the odds of recovery being very slim. Unfortunately, the fungal infection was too severe, and even the most advanced drugs and two surgeries could not beat it. We are grateful to all people who helped Alesha when he first fell ill four years ago and recently, when his disease returned. Everyone who was fortunate to meet knew this remarkable young man will remember his kind attitude to people and his courageous fight against the deadly disease. Our thoughts and prayers go out to Alesha's family.

November 29, 2009. Alesha Levantuev is in critical condition now as his intestinal infection worsened. Tomorrow the doctors will attempt to remove nectrotic tissue from his intestines. Alesha may need expensive antibiotics Noxafil and Amfolip after the surgery.

November 25, 2009. Anna Soboleva has severe form of graft-versus-host disease, a complication of the bone marrow transplant. She is hospitalized in the intensive care unit. Her parents need help purchasing medications she urgently needs, Albumin and Vfend. Please help Anna battle her condition!

November 3, 2009. Alesha Levantuev has been receiving expensive treatment with antibiotics for the intestinal infection. His condition is stable; however, he may need additional funds for treatment. We'll be updating soon.

October 26, 2009. Alesha Levantuev suddenly developed acute appendicitis, and needed urgent surgery. While the surgery went well, Alesha still has a high fever and a very low white blood cell count. He is being treated with antibiotics and leukostim.

October 13, 2009. Alesha Levantuev is completing the forth round of chemotherapy, and is doing well. A CT scan didn’t show any regions with high uptake of contrast agent.

September, 2009. Sadly, one of our previous patients, Alexei Levantuev, has suffered a relapse of neuroblastoma after being cancer-free for 2 years. He is currently undergoing chemotherapy at a St. Petersburg hospital. Alesha has not yet requested financial assistance from HelpJournal but we are following his story closely and wish Alesha quick and full recovery. If you would like to help Alesha and his family during his current course of treatment, please visit his page on website of our sister-foundation Advita.