Eugene Reshetnikov

Eugene Reshetnikov is 8 years old. He lives in Kazakhstan, Kyzylorda town with his mother, father and little sister who was born in 2013. Eugene suffers from cystic fibrosis with his lungs affected as well as his intestinal tract. Help Journal has been helping Eugene for almost 3 years. During this time we managed to raise money to pay for several Eugene's treatments in Moscow, where he has been prescribed with the appropriate therapy regimen. Thanks to timely diagnosis and treatment Eugene's condition is pretty well. Because they just recently had a baby in the family, Eugene and his mother can't travel to Moscow in the next year. Eugene will receive his treatment at home. He has got all the necessary medications but we ask you to help with buying high-calories nutrition and specialized vitamins.

In addition to cystic fibrosis, Eugene has epilepsy and has to take anti-seizures medications regularly. As any child with cystic fibrosis, Eugene needs carefully selected antibiotics, inhalers, hormonal medications, vitamins, therapy for his gall bladder, ferments, therapy for immune system, massage, physical therapy, and respiratory therapy. the list of things to be done never stops.

Valeria tells us Eugene's story in her letter: "Our little boy was born in 2005. And from the moment he was born, our fight for his life began. We spent most of his first 18 months of life in our local pediatric hospital, and the doctors didn't know what was wrong with him. Eugene had digestive problems, and he gained hardly any weight. He had chronic bronchitis and frequent fevers. Hospitalizations in Children's Hospital in Almaty didn't help: our child was slipping away in front of our eyes, and the doctors didn't know why. At one point, Eugene became too weak to eat or move, and we were advised to seek treatment in Russia as a last resort.

We gathered all the money we could find. We are grateful to our friends and relatives who all contributed as much as they could. Only with their help we were able to pay for the trip and the hospital stay in the Institute of Pediatrics. In Moscow, the doctors at the Institute examined Eugene and immediately diagnosed him with cystic fibrosis. With adequate treatment, Eugene's condition dramatically improved. We used to compare him to an ailing flower that began to blossom again.

Unfortunately, shortly after returning home Eugene's health began to deteriorate again. We sought treatment in the capital of Kazakhstan, Almaty and doctors there recommended going back to Moscow. Despite an urgent referral from the Kazakh specialists, it took a year for us to get the coverage for Eugene's treatment. As our son requires constant care I am unable to work. My husband's salary is just enough for feed us. Eugene's pension and supplements are barely covering medications.

We have asked many Kazakh private companies and got turned down by everyone. We have been to charitable funds and were denied help as Eugene's condition is life long and they help children who can be cured. I think there is such attitude only because they have never heard about cystic fibrosis. You can not even imagine where we looked for help! We have contacted local newspapers and television, we asked charities in the capital Almaty. As soon as people hear that our child has an incurable genetic condition, they turn us down. No one is willing to spend money for treatment when it is known that the treatment will be required for the rest of the child's life.

This is why we are asking the Help Journal for assistance. The doctors tell us that with adequate treatment, Eugene will be able to have a normal productive life. Please, give him this chance. Help our little boy!

Until his diagnosis, Eugene was too ill to interact with his surroundings. He was not interested to play with other children. When our friends with children visited us, he would just stay in his bed and turn away. He was constantly miserable. Looking at him now, you couldn't even tell that he used to be like that. He is a very active and inquisitive little boy who tires out very quickly. He likes to play with his friends, is very interested in animals and loves to dance."

Over three years that we know Eugene, he has matured a lot, talking like an old wise man! He loves reading encyclopedias especially about animals and Space. He has a great memory and able to retell very close to original. He asks parents to read to him every day. He is helping Valeria, his Mum. Eugene is a very sensitive boy, he feels for his Mum, and tries to reassure her when she is worried and crying. Eugene started 1st grade in September 2013. His teachers are very proud of him, he is the first to talk during open lessons, he gets prizes and books for best answers.

Eugene's Mum, Valeria Letshenko, is an active member of organization "Special needs kids with Cystic Fibrosis". The organization was created to change the situation with cystic fibrosis in Kazakhstan. One of its aims is to make the government to register medications necessary for cystic fibrosis treatment as well as subsidizing the money to pay for those medications. The organization has already achieved a lot - the government started to fund such medications as Pulmozyme and Creon. Valeria is going to continue her fight to improve access to medications.

Valeria also told us about problems facing cystic fibrosis patients in Kazakhstan:

"At the moment cystic fibrosis patients have access to such medications: Creon, Pulmozim and antibiotic Fluimuzil. Kids are getting diagnosed faster thanks to Russian specialists coming to train our doctors. Unfortunately, there is no progress with treatment options. Even with proper diagnosis, the treatment plan will differ to the one you will get in Russia. Families have to seek help from Russian specialist to check their treatment regimen and prescribe proper treatment.

As you know, most cystic fibrosis patient are carriers of bacteria Pseudomonas aeruginosa in their lungs. Antibiotics to treat this bacteria are not registered in Kazakhstan. These are antibiotics that are used in the whole world to support life of cystic fibrosis patients! Thus our local doctors are not even able to prescribe those medications. At the moment there are only two families in Kazakstan who are treated with that antibiotics funded by local government, and these are the families who found the way to Moscow to get proper recommendations.

Information from patients about treatment in Kazakhstan.

The department for cystic fibrosis treatment was open in Kazakhstan capital, Astany. The department is located in Children's hospital of Almaty (pulmonary department), all cystic fibrosis patients from Kazakhstan are eligible for treatment there. The centre for rehabilitation of pulmonary patients was opened in the Children's hospital. Another center called "Motherhood and Childhood" was open in Astany and accepting cystic fibrosis patients. Unfortunately, there are no cystic fibrosis specialists in Kazakhstan. Russian specialists were coming to teach local doctors but there is still no experience.

Parents of our patients had a chance to be treated in the mentioned above clinics, all of them had very negative experience. Here is what one Mum says: "I took him to the pulmonary department in Children's in bad but stable condition, I was caring him out of there dying, but I managed to get him to Moscow, literally had to carry him in, he could run out of the hospital! Doctors are fascinated with his symptoms, I know one thing - they give the right treatment in Moscow."

Another mum writes: "Our local government was sending us to Astana or Almaty for treatment, but when we found out what the treatment will look like there, it turned out that they can not do diagnostic for liver (scanning and doppler of the liver were not available) - and it is the main part of diagnostic for us. Honestly, it is scary to get treatment in Kazakhstan, as it seems like a trial and error there. My child remembers clearly how he was released from ICU in 2009 straight home, with no hope, to die. And doctors said that none would help us. How can we trust them now?"

News

December 18, 2014.

We'd like to extend our gratitude to all of you who gave donations for Zhenya and Masha Reshetnikov.
The treatment was required very urgently and we had no time to raise money and a bigger charity Pomogi.org helped them this time. Money that you have collected in the amount of $1000 was spent towards purchasing train tickets to Moscow for the entire family.
The medical exam in Moscow showed that Masha Reshetnikov has a cystic fibrosis complicated by pseudo-Bartter's syndrome and Pseudomonas aeruginosa infection.
Russian charities and volunteers helped with the purchase of an antibiotic to treat the infection, and both children received a six-month supply of the medication. Masha gained some weight during the course of treatment in a hospital! This is very good result. Unfortunately, Masha still has reduced level of oxygen in her blood sometimes, so she constantly needs the oxygen concentrator and a pulse oximeter.
Zhenya still remains in critical but stable condition.

February 12, 2014.

Eugene is struggling during this winter. He got ill again just before the New Year. He is undergoing treatment prescribed by Moscow specialists and his mother constantly keeps in touch with doctors in Moscow.
Eugene's little sister, Masha, is growing and has already started babbling! Eugene adores his sister, sings lullabies to her, constantly kissing and cuddling her.

Eugene needs sponsors to purchase and deliver to Kazakhstan special vitamins Aquadecks and high-calorie nutrition not available there. If you would like to help Eugene, please,contact us.

October 1, 2013.

Mother of Eugene Reshetnikov sent us a letter. Many news, some are good and some not so. Eugene has been sick a lot since spring. He had bronchitis and pneumonia several times. Due to the acute illness Eugene lost significant amount of weight which for a child with cystic fibrosis is extremely difficult to gain back. Eugene has to start taking extra high in calories nutrition and special vitamins Aquadeks. His eight' birthday Eugene spent receiving continuous IV infusion. He was very upset and was verbalizing his disappointment: "Why is it happening, it is my birthday today, and I feel so bad?"

And the good news is that Eugene's mother Valeria has delivered a healthy baby girl on October 30th!

Also despite his sickness Eugene started school this year. Eugene likes being at school, enjoys being around his peers, he is very happy to meet new friends, loves his teacher. He says: "She is so smart, tells us so many interesting things that I never knew before!" He tries so hard to study well, raises his hand to answer all the time and becomes disappointed if it was not his turn to speak. Unfortunately, if he continues get sick often, Eugene will have to be home-schooled.

To correct his treatment regimen Eugene goes to Moscow regularly with his mother. But due to the birth of the little sister they are unable to travel at the moment, so Valeria is trying to treat Eugene at home consulting with specialists in Moscow via telephone. Eugene has all necessary medications, but the family will very appreciate help in buying specialized nutrition and vitamin for Eugene. Those are not available in Kazakhstan and family cannot go to Moscow now.

Please, feel free to send us an e-mail on info@helpjournal.org, and we will tell you how you can help Eugene!

March 27, 2013.Eugene Reshetnikov is doing well. In August, he was hospitalized twice with pneumonia but now he is feeling better. He also has great news to share with us – in September he started going to school. He is not able to attend school every day, and studies at home when he is not feeling well. Teachers are very happy with Eugene, he is a very good student and even has already won some awards. His Mom Valeria stays in touch with doctors in Moscow and consults with them regarding Eugene’'s treatment. Doctors believe that there is no need for him to come to Moscow in the near future. The family is able to order from Russia all necessary medications that are not available in Kazakhstan. We are staying in touch with Eugene’s family. We hope he continues to feel well and do well in school, and we will keep you updated.

March 15, 2012.

Eugene Reshetnikov is getting ready for his semi-annual hospitalization in Moscow. The admission date is already scheduled for May 9th . Eugene and his Mom Valeria are preparing all necessary documents and tests. Eugene has grown a lot, take a look at his recent photos!

November 6, 2011. Eugene has just returned from his semi-annual check-up and treatment in Moscow Institute of Pediatrics cystic fibrosis clinic. There is bad news: tests showed the presence of active Staph. Aureus infection. Staph. Aureus is a type of bacteria that occurs naturally in many healthy individuals and is harmless in the general population. However, in people suffering from cystic fibrosis it can cause a life-threatening pulmonary infection. The good news is that the culture test was done on time and treatment was started immediately, while Eugene was still in Moscow. We hope that timely treatment will take care of the infection, just like it did the last time Eugene had staph infection back in 2009. Another culture test will be done soon to assess how successful the treatment really was. We thank everyone who continues to help Eugene and who made it possible for the Help Journal to pay for this recent hospitalization in Moscow.

September 20, 2011. Eugene Reshetnikov and his mom spent this summer in Russian countryside. Here’s what Valeria wrote to us: “It was really hot this year in Kysylorda. Eugene can't tolerate hot weather, his skin became very salty again and he almost stopped eating. So I decided to take him to Russia, and it turned out great. Eugene started to feel better and his appetite returned. He really enjoyed being outdoors and running in the grass – at home, there's mostly sand and dust. He was so happy there! We picked berries and mushrooms, and Eugene even learnt how to tell mushrooms apart. It was like a fairy tale!”

Eugene is scheduled to return to Moscow for tests and treatment on October 17 of this year. Once again, we ask all of our donors to help us raise money to pay Eugene’s hospital bills. Valeria tries to save as much money as she can, and still has some money left over from the previous trip, but we anticipate they will need at least additional $1500.

In the meanwhile, the organization of Kazakh parents of children suffering from cystic fibrosis that Valeria has created had its first victory: government began supplying the children with Pulmozyme and Creon. And the parents don’t plan to stop there, they are continuing to work on improving the access to necessary medications for all cystic fibrosis patients in Kazakhstan.

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!

February 19, 2011. This winter has been difficult for Eugene - 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.