Grisha Yakunin

Grisha Yakunin is a gifted young man. He is a computer prodigy and has built his last computer himself. Grisha is fond of computer design and programming and, of course, enjoys computer games. Grisha is not attending school due to chronic life-limiting illness - cystic fibrosis that affects his lungs as well as digestive system. He is currently taking a distance learning course in North West State Technical University. Grisha turned 18 this year. Help Journal has been supporting Grisha for 3 years.

Grisha's parents Lyudmila and Michael met during their freshman year in college in St Petersburg, Russia and got married during their senior year. The same year, 1995, their son Grisha was born. After graduation, Michael was drafted and for two years he served in the military. He was stationed in Dauria, by Russian-Chinese border, and his family stayed in the Caucasus where Lyudmila is from. When his military service was over, the young family was not able to return to St Petersburg due to economic crisis of 1998. For the next four years, they stayed in the Caucasus.

Since his birth, Grisha was getting sick very frequently but the doctors couldn't figure out what the problem was. They prescribed antibiotics for the lung infections and enzymes for the digestive problems. For the six years that Grisha lived in the Caucasus, he and his family went through nightmare trying to get answers to their questions about Grisha's poor health. He was finally diagnosed with a severe mixed form of cystic fibrosis when the family returned to St.Petersburg in 2002. Unfortunately, due to the late diagnosis and lack of proper treatment for the crucial first years of his life, Grisha's lung function has been severely compromised.

In the last several years Grisha's condition has been deteriorating. Grisha constantly needs antibiotics to keep lung infections at bay. When he is hospitalized, he gets them at no cost but when he is at home, only inexpensive antibiotics that the bacteria in his lungs are resistant to are available through federal insurance. Grisha needs Tobramycin, which is very difficult to get, Colistin, which is currently not available in Russia, or Zyvox which costs 60 thousand rubles (2 thousand dollars) for a two week course and not covered by federal insurance. As his digestive system is also severely affected by cystic fibrosis, Grisha constantly needs specialized high-calorie food supplements. When his condition worsens he often becomes very week and needs a feeding tube.

Two years ago Help Journal helped Grisha to buy portable oxygen concentrator Respironics EverGo, which allowed him to get out of the house, drive a car and even go to rehabilitation by plane.

Grisha's family lives in St. Petersburg in a rental apartment. Grisha's treatment is very expensive. One course (15 days) of antibiotics costs $1875.This year he already required two courses. Zyvox (antibiotic) is the main expense, additional medications will cost at least $190 each month, $125 has to be spent on high-calorie supplemental nutrition and vitamins on top of that. Plus family has to provide for airfares to get to rehabilitation and back, this year $2500 were spent on airfares to cover the cost of 2 trips.

At the moment Grisha also needs two pieces of special equipment which is not covered by federal insurance: inhaler eFlow® rapid that costs around $1000 dollars and BIPAP device for non-invasive lung ventilation (the cost varies on the average around $3000).

Grisha's family survives on a single income and Grisha's pension. This money is barely enough to cover necessary medications and very basic living costs.

Local hospital helps Yakunins, from time to time charitable funds raise some money to cover expensive antibiotics, but it is not enough. That is the reason why Grisha's mum asking us for help.

Grisha studies himself, he is unable to attend school, and being home-schooled by his mother. Though Grisha surpassed his mother in computers long time ago. Grisha likes shooting range and bowling, cats and rabbits. He adores reading, watching movies and having a chat with his best mate, Seva. He loves sea shore in summer and high ice slopes in winter, fishing, yogurt cakes and watermelons and much much more.

News

December 18, 2014. We are very grateful to all of you who helped Gregory Yakunin this year. Galina the donor and her friends sent to Gregory special nutrition Scandishake and vitamins.
Your monetary donations are regularly used towards purchasing for Gregory special nutrition and vitamins for people with cystic fibrosis. We also recently purchased and shipped from US to Russia spare parts for his noninvasive ventilation device. Grisha takes courses of this antibiotic as prevention of infections. Each package of the medication costs 12600 rubles. Due to the fall of Russian ruble against US dollar there is a danger that price of drugs will increase drastically. Therefore, we'd like to purchase this drug for his future use. During the past 10 months Gregory has never been given this antibiotics for free at the adult clinic to which he is assigned to after turning 18, even though he is supposed to get them for free. So his mother had to buy the medicine at her own expense.
Gregory is truly a fighter and he is coping very well. This year he was accepted to North Western Technical University. He is majoring in remote programming and in November he successfully finished his first semester!

February 12, 2014.

In the end of 2013 Help Journal provided Yakunins family with $500 to cover ongoing medical expenses.
Thanks to all of you who helps Grisha! We would like to remind that Grisha will soon need BiPAP machine, new inhaler, as well as constant help with expensive antibiotics.
Grisha stil needs sponsors to purchase and deliver to St. Petersburg, Russia special vitamins Aquadecks and high-calorie nutrition. If you would like to help Grisha, please, contact us.

October 1, 2013.

Grisha spent a part of the summer holidays at the Black sea shore, in Evpatoria, where he had lots of new experiences. Grisha was feeling well through the whole trip, unfortunately, just a day before departure he had an acute exacerbation of his cystic fibrosis and had to start the course of antibiotics and supplemental oxygen via portable oxygen concentrator. At the moment his condition is stable. Grisha is turning 18 soon, that means he is going to be discharged from all follow up appointments in pediatric hospitals and will have to find new doctors who are treating adult patients. Children's Hospice, that have been helping Grisha and his family through all those years, all the staff who became friends with the family over the time, will not be able to help Grisha once he turns eighteen. Grisha's treatment is very expensive. One course (15 days) of antibiotics costs $1875.This year he already required two courses. Zivox (antibiotic) is the main expense, additional medications will cost at least $190 each month, $125 monthly has to be spent on high-calorie supplemental nutrition and vitamins on top of that. Plus family has to provide for airfares to get to rehabilitation and back, this year $2500 has been spent on airfares to cover the cost of 2 trips.

July 7, 2013.Condition of Grisha Yakunin remains stable. Recently, he has traveled to Kislovodsk for treatment and rest. Grisha was able to take his portable oxygen concentrator on a flight with him and use it when his blood oxygen level was too low. Thanks to the Help Journal donors, he can even travel now!

March 27, 2013. Grisha Yakunin is doing quite well. Thanks to the timely treatment and hospitalizations, he was able to avoid serious complications during 2012. He also had a one and a half months long vacation in the countryside this summer, which was possible only because Grisha has a portable oxygen concentrator that we have purchased for him thanks to your generous donations. Of course, Grisha still has many health problems. During the past year, he grew by 4 cm but failed to gain weight. As a result, he is now in the hospital getting nutrition through a feeding tube. His condition is stable but he will likely stay in the hospital for a while longer. To help Grisha gain weight, he needs Skandishake for diabetics. He is also almost out of specialized vitamins. Please, help us purchase specialized nutrition and vitamins for Grisha. Ideally, we would like to find someone who would be willing to help Grisha with nutrition and vitamins on a continuous basis. Please, contact us if you would like to help. Thank you!

April 5, 2012. Once again, Grisha Yakunin needs our help. Last year, we purchased a portable oxygen concentrator for Grisha. It works great and helps Grisha tremendously. Right now, we urgently need to raise $6000 USD to cover the cost of three course of treatment with antibiotic Zyvox©. Over the past year, Grisha suffered several acute exacerbations of cystic fibrosis but, luckily, he recovered. He had his last inpatient course of intravenous antibiotics in the end of March.

Ludmila, Grisha's Mom: "Grisha is doing better now. While using inhaled Colistin ©, he managed to stave off exacerbations for over 2 months after his last inpatient stay, gained 2 kg and grew by 1 cm. Our main issue now is the lack of antibiotics as the ones that help Grisha are very expensive. This is a serious problem for us, as it is often not possible to be admitted to hospital for treatment when Grisha’s condition worsens: sometimes, there are no available beds available, or the hospital runs out of medications and we have to wait for the bidding to supply them and for delivery. This coming summer, the hospital where Grisha is usually treated will be closed for 1,5 months. We always need to have our own supply of antibiotic Zyvox©, in case we leave town and Grisha suddenly feels worse. We need to have enough Zyvox for at least one course of treatment (14 days) but a 6-week supply (3 rounds of treatment) would be optimal. I try to get medication through government health services but I am rarely successful. Last year, we were lucky to get an emergency subsidy to pay for one 14-day course. I will try again this year. I received emergency help from our social services, that amount payed for 14 days of Zivox! This year I will again. So far, my correspondence with the health authority in our city hasn’t been successful but I am not about to give up".

Antibiotics should never be used in doses that are lower than therapeutic or stopped before completing full course of treatment as it results in bacteria becoming resistant to the particular drug. Unfortunately, this is common practice when antibiotics are in short supply. Grisha needs a full course of treatment every time he has a lung infection. Last year, it happened five times. We would like him to have enough medication for at least three treatment courses should he need treatment again when the local hospital is unable to admit him. The total amount we need is $6000 USD. Please, help Grisha stay as healthy as possible!

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 favourite 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 nd 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 travelling. 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."