Grisha Yakunin is a computer prodigy. This fifteen-year-old enjoys
computer design, programming in 1C, and has built his last computer himself. Of course, he likes computer games, too. Due to his medical
condition – a severe form of cystic fibrosis that affects his lungs as well as digestive system – Grisha is homeschooled and often needs to
be hospitalized.
Grisha’s parents Lyudmila and Michael met during their freshman year in college in St Petersburg, and got married in the
senior year. The same year, in 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 hell 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 two years Grisha’s condition has been deteriorating. In 2010, he had to be hospitalized five times, and in 2011
– already twice.
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 for free. He needs tobramycin, which is very difficult
to get, colistin, which is currently not available in Russia, or zyvox which costs close to $1,400 for a two week course. As those are not available, Grisha
has to make do with inhaled fluomycin, which only costs $3.50 per dose. 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. Lately,
he has lost a lot of weight and during his last hospital stays he needed a feeding tube round the clock to help him maintain weight. Right now, his
weight is 77 lb and his height is 5’ 2’’.
But Grisha’s most urgent need is a portable oxygen concentrator. Chronic lung infection have lead to a respiratory insufficiency, a
nd his doctors recommend daily 16 hour oxygen therapy.
Right now, Grisha only has a stationary oxygen concentrator that his family raised the money for on their own. Unfortunately,
it doesn’t allow him to leave his apartment. Also, cheap portable concentrators cannot be used by patients with cystic fibrosis: they do not produce
oxygen of sufficiently high concentration, and can only supply oxygen in short bursts that is makes them very impossible to use by people with
severe respiratory failure.
Portable oxygen concentrator Respironics EverGo by Phillips would work very well for Grisha. In the US, it costs $2500, while
it’s price in Russia is upwards of $6750. One of our volunteers agreed to take it to Grisha from the US in mid-June, which means we have to order
it very soon.
IMichael’s and Lyudmila’s salaries and Grisha’s disability payments are barely enough to cover rent, loan payments and basic living expenses and
medications. Since Grisha has turned 15, his Mom is no longer eligible for paid medical leave when she needs to stay home with him. As Grisha is
sick and needs care very frequently, she might lose her job altogether at any moment.
The hospital, charitable foundations in St Petersburg and the children’s hospice in St Petersburg help the family as much as they can but they
cannot afford to purchase expensive medications or a portable oxygen concentrator for Grisha. This is why Grisha’s mom Lyudmila has asked us for help.
In addition to his passion for computers, Grisha loves animals, enjoys going to the shooting range and bowling. He loves to read, watch movies and
hang out with his best friend Seva. He makes clay models of spaceships and weapons. He likes swimming in the sea, sledding from ice hills, fishing,
frozen yoghurt cakes, watermelon and much, much more.
Portable oxygen concentrator will allow Grisha to not be confined to home and will improve his quality of live tremendously. With it, he can
even go bowling with his friends! Please, let’s help him!
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."
