We would like you to meet Eugene Reshetnikov from Kazakhstan.
Five-year-old Eugene has cystic fibrosis. While cystic fibrosis is a devastating diagnosis for any parent to hear, it is particularly difficult
for families of the young patients in countries like Kazakhstan where the doctors do not have expertise to diagnose, let alone treat it.
Until this situation improves, biannual trips to a clinic abroad specializing in treatment of cystic fibrosis are the only option for Eugene.
The nearest such facility is Department of Pulmonology of Institute of Pediatrics in Moscow, Russia. A course of treatment there costs about $2000.
Eugene also regularly needs expensive antibiotics to combat life-threatening lung infections.
Here’s a letter from Eugene’s Mom, Valeria:
“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.
This year, we were informed that Eugene’s treatment in Russia will no longer be covered.
As our little boy is often very sick, I am not able to work. My husband’s wages barely cover the cost of food, and the Eugene's
disability payments are not even sufficient to pay for his medications.
We have asked many Kazakh private companies and charitable foundations for help, and got turned down by everyone.
We have even contacted local newspapers and television. Charitable foundations only raise money for children who need surgical
treatment. 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 play with other children.
When our friends with children visited us, he would just stay in his bed and turn away. 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 likes
to play with his friends, is very interested in animals and loves to dance. Very often he would hear music and
immediately start dancing to the beat. Unfortunately, due to his condition he gets tired very quickly, which upsets him and sometimes even
brings him to tears.
Recently, Eugene celebrated his 5th birthday. We still remember that some time ago doctors told
us he will not live to be five…"
Valeria also told us about problems facing cystic fibrosis patients in Kazakhstan:
"There is no support for cystic fibrosis patients and their families in our country. We have
to pay for everything out of pocket. This year, a new legislation dealing with drug coverage has been adopted.
According to it, we should be receiving such medications as Pulmozyme, Glutathione and Colistin. Paradoxically,
those medications have not been approved for use in Kazakhstan, and are not available.
Most doctors do not know anything about this condition and are not willing to learn.
Dozens of children with cystic fibrosis are hospitalized annually in Almaty, and most of them are not officially diagnosed.
Doctors are reluctant to diagnose children with cystic fibrosis, often mistakenly ascribing the symptoms of cystic fibrosis-related lung disease
to either bronchitis, pneumonia or tuberculosis. In many cases the correct diagnosis is confirmed only when parents insist on extensive testing.
Before diagnosis, children do not get the treatment they need, and even after the diagnosis the treatment prescribed is often not appropriate.
We have to rely on phone consultations with specialists in Moscow, who council parents and help choose the correct medications. Our
government is reluctant to admit there is a problem as it will require a lot of money to address it.
You know how difficult the situation is for the cystic fibrosis patients in Russia, and it is far worse in Kazakhstan.
This is why it is so important for us to take Eugene to Moscow at least once a year. In the clinic there, he only gets
a course of treatment with medications that are not available in Kazakhstan. Even more importantly, doctors in the Institute of Pediatrics
run all the necessary tests in order to develop a treatment plan that we can follow at home for the next year."
In addition to fighting for her own son's life, Valeria is working hard on organizing a support group for falilies
of children. Together, they are determined to fight for their children’s right to treatment. A lot of hard work lies ahead of them, and we wish them luck.
In the meanwhile, we ask for your generosity to help Eugene get the life-saving treatment.
News
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.
