Other Dima's photos

Hello!
I am the mother of Dima Parmenov, aged 15, and I would like to ask you for help.
On March 8, 2007, as Dima was crossing the road on a crosswalk as the stoplight was green he was run over by a car. He got a complex trauma: grave brain contusion with hematomas in the right parietal and brain stem regions, closed fracture of the left humerus with bone fragments displacement, contused lungs, liver hematoma, duodenal rupture complicated by general purulent peritonitis.
For two months my son was in a coma, and in June-July 2007 he started to have problems with his heart. The doctors said he would not last for more than a week. For 1.5 months he was constantly getting injections of adrenaline and dopamine. And he did survive!!!
Since the very first day he has been breathing with the help of artificial lung ventilation (ALV). Two hematomas have been removed through craniotomy, and numerous surgeries have been performed. In September 2007 Dima got a tracheostoma (a tube in his throat that forces air into his lungs). Since October 2007 he has been getting food through a gastrostoma, that is, food is injected into the intestines with a syringe through a tube, because Dima cannot swallow the amount of food he needs (due to the tracheostoma in his throat). There were issues with the broken shoulder but he can move his left arm as easily as the right one. Even very bad bedsores he had got in the fist two weeks healed completely.
In January 2008 we were so happy: in spite of all the surgeries the boy has had it was as if he was born again. He remembered the songs he liked and could even sing in English, he had no problem talking, he tried to read and remembered the letters. An article about Dima was published in Komsomolskaya Pravda (some facts were not true though). People who read it started to offer help. We got help with the payment for several massages and acupuncture sessions and had great results. Dima started to breathe on his own, little by little until he could breathe for up to 5 hours a day but... on the weekend he was disconnected from the machine for 10 hours, and from that day he got cramps (episyndrome). He had no problem recovering from the first seizures but with time his condition after the seizures began to get worse. He got a shunt and another craniotomy was performed.
It was like a vicious circle: he could not breathe due to constant hospital-acquired pneumonia, and he could not get rid of pneumonia due to artificial lung ventilation. As soon as he got anticonvulsants his breath disappeared at all. Dima underwent a course of expensive metabolic homeopathic aminoacid treatment (for which we are grateful to my colleagues) but the cramps stayed there. There is some motion activity but it is very weak. The boy can talk and sometimes even tried to get up, and that's after everything he had to endure. Emergency physicians and neurosurgeons have done all they could, but rehabilitation is not their specialty area. Besides, there were no cases of such lengthy artificial lung ventilation history in the hospital before. There is a boy who spent 2 years on artificial lung ventilation together with Dima, and his parents managed to acquire the MARK-IV device. Nikita has been staying at home since January 2009. Of course there are issues there as well but the boy is feeling great because he is with his family, and he even spent the summer with his grandmother in a country house. Whereas we have become a real nuisance for the intensive care unit during these 2 years.
I talked to the Institute of the Human Brain in St. Petersburg by telephone and to another institution in Ekaterinburg over the internet, but neither of them has had any experience with such long ALV history. With ALV, people either start breathing within a year or die. Both St. Petersburg and Ekaterinburg could admit Dima for a rehabilitation course but only without the ALV machine to which he is constantly tied.
Russia has no experience in the treatment and rehabilitation of patients in intensive care who have been using artificial lung ventilation for such a long time. Dima and Nikita are the only two persons in Russia who still live after 2 years of continuous artificial lung ventilation. There is only one way out: a diaphragmatic stimulation device (we have a conclusion decision of Professor V.V. Stupak M.D.). Without that device it is impossible to take the boy home: he is doomed to remain in intensive care forever since he is connected to a hospital ALV machine, and that is why there is no way he could have any treatment administered or diagnostics done. The MARK-IV device that stimulates breath (made in the USA) costs over 2 million roubles. We have no money to buy it, and Dima cannot start breathing on his own. In foreign countries lots of people live with that device for many years. Dima is still a child, and there is no doubt that his body is trying to recover. During these 2 years Dima has grown and matured, he's a young man already.
Every day I go to hospital after work to take care of him, but it's only some 2 or 3 hours, and I come home at 11 p.m. Every day I make him fruit purees as well as fish, meat or chicken trying to make sure he's getting all he needs. I have only missed 3 days in the past 2.5 years. At first my husband has been visiting Dima together with me (I am now in the process of divorce but we have been living separately for 5 years already), and that lasted for a year, then he disappeared for another year. Now he is visiting Dima together with our older son who has been living with him for the past 3 years. 1 day per week on a weekend is already a great improvement! I want Dima to come home. He has been doing such a great job trying to survive, and he did it! Sometimes I look through his pictures, and there is a smile on all of them. He is a very cheerful and openhearted person. Since his very first year at school he has been having a very active school life and was doing very well.
I turned to the Department of Social Development of the Novosibirsk administration for help in acquiring the device but was refused in no uncertain terms. The same department of the Novosibirsk region told me that they could allot a sum equal to 10 living wage amounts but since it would not solve our problem anyhow they just forwarded my request to the healthcare department (I was there too and the answer was "no" again).
I do not despair: my son is keeping his head up, and my situation is not as difficult as his.
I called the Rossiisky Fond Pomoschi fund, and the manager told me that they only help children under 5, and they would rather spend those 2 million on 10 people – maybe it should be like that too... The Linia Zhizni fund only helps children under 15 with congenital diseases, and Dima does not qualify.
As to the driver who was responsible for the accident: he is 27 and he hit my son while driving a stolen car in the state of intoxication, and it took me a long time to make sure those cases are joined together. He is now serving his sentence in a penal colony settlement in the Kemerovo region, and I only got 20 thousand roubles from him in 2 years right before the court session on December 18, 2007. This year I wrote a letter to the director of the colony settlement, as the result I received claims for 2390 roubles for the first 6 months of 2009.
One of my colleagues once read a fiction book about the undine syndrome and suggested that I do an internet research on this problem. This is how I came to know Evgenia Shakhmaeva. I called her in March 2009 and told her about the stimulation device. And one of the boys in Children's Hospital 1 got the device and was discharged. We decided to join our efforts in making our healthcare institutions acquire the device, but to no avail. I am going to write to the Ministry of Healthcare although there is almost no hope that they will help. It is great that the Shakhmaev family got to know the AdVita fund and then also contacted the Materinstvo forum, and I saw the results on that forum.
Dima's disability pension + my salary + 1 thousand roubles from my husband – that's all the budget we have, and Dima needs food and drugs and other things, and there is no other source of income.
Dima has endured so much and keeps struggling with his diseases. Of course I know how serious his trauma was and do not hope for a speedy recovery. I am asking you to help me buy this expensive device so that my son's efforts are not in vain and he comes back to a normal life.

Respectfully,
Olga Gennadievna, mom
Home address:
Aviastroitelei 14-79,
630074 Novosibirsk, Russia
Contact phone:
+7 (923) 242-44-13

Sickness certificate
Contract for the delivery of the device (Russian and English versions)
Reply of the Social Policy Department of the Novosibirsk Mayor's Office
Reply of the Department of Social Development No.1
Reply of the Department of Social Development No.2

Update as of September 18, 2009. Dima's temperature went up to 40°С, he has pneumonia. But it often happens to those who are using ALV, and it is not the first time Dima is sick with it. He keeps his head up and is struggling with it although he is not feeling well either.
Today we gave Olga some CDs with music for Dima so that he can entertain himself while listening to it. We are very grateful for all of you who are not indifferent to Dima's trouble!!!
Ksenia, volunteer

Update as of September 21, 2009. Here's what I have to report: I sent all papers to the Ministry of Healthcare by registered mail. The journalist from the AiF newspaper in Novosibirsk will only be there tomorrow. Today I am sending the material to yet another fund.
Dima is doing better, he cheered up a bit after I spent the weekend with him. We started with a new treatment course and I believe it will do him good although a human brain is so unique that there are no treatment methods that are sure to give results. I study all drugs a hundred times by reading all the instructions carefully, especially all information on contra indications. Thank you for thinking about us, and Dima is sending all of you a smile!
Dima's mother

Update as of November 30, 2009. Dima just got over one more pneumonia. Yesterday there was another doctors' council. They decided to buy an improved version of artificial lung ventilation apparatus for the home use from the Regional Health Administration funds. They will try it for three months, and hopefully Dima will start breathing on his own. If not, they will be thinking of something else.
I am hoping that in three months Mark-IV breathing pacemaker will be certified in Russia.
Dima's mother

Update as of December 14, 2009. The full amount was raised! On December 2nd, a medical organization in Novosibirsk transferred 1,000,000 rubles, and Pomogi.Org charitable fund raised 587,000 rubles.
Today I went to the Regional Health Administration. They will not be able to give me anything for Mark-IV, but there is a good chance that next year they will buy Dima a artificial lung ventilation equipment that can be used at home. Seven months of applying for help to federal agencies brought zero result, while in three months of fundraising, our supporters raised close to 2,000,000 rubles! Shame on all the federal medical organizations!
The certification of Mark-IV is about to start. On Friday we will know the expected dates of the certification completion.
I will now work on prepayment for the equipment and signing a new agreement.
Pomogi.org is also helping with raising money for another girl from Arkhangelsk region, Lisa Kuchina. If we raise the money, Avery, the manufacturer, may offer us a discount. I am very hopeful that it happens, because we need to buy lots of other things for the house: bed, special chair, some other medical equipment.
Shakhmaeyvs are sending their warm Siberian wishes! We are now very close with them and call each other every day.
Thank you very much for being the first to support us! We will continue moving along, and will certainly win so that our ids can live at home!
Dima's mom

Update as of March 29, 2010. We urgently need help with paying for the doctors' training in Germany! Our families - Shakhmayevs, Parmenovs and Kuchins - were so happy that our children will fin ally be able to come back home after several years spent in intensive care units of the hospitals. Thanks to help of caring people, we were able to raise money for this expensive equipment. We even managed to organize certification of the equipment in Russia, because without it the health bureaucrats did not allow the doctors to operate on our children.
Once the registration is completed (early May 2010), the surgeries are planned to take place in Novosibirsk and Archangelsk for Inna Shakhmaeyva, Dima Parmenov and Lisa Kuchina.
Now we are looking at the issue of post-surgical rehabilitation. The doctors need to go for training at a clinic in Munich which has been performing this surgery for many years. In Russia this method, unfortunately, is not yet in place. The doctors need a certificate that confirms that they completed training for installation and use of the pacemaker (Mark IV) and the clinic in Germany will issue this document once the training is over.
The training is necessary not only to ensure there are no more obstacles for our children to undergo surgeries, but also for our Russian doctors to learn from experienced German colleagues who know how to ensure successful rehabilitation to return the patients to normal lives after the implantation of pacemakers. All children are different and they need individualized therapy. We are very concerned about our children because no one can tell us how their bodies will react to the implants, so the experience of German doctors will be very helpful.
M. Kafanova, neurosurgeon, and S. Sirota, intensive care specialist, who will work on rehabilitation of our children, are planned to go for the training.
These specialists already have experience with a successful implantation of Mark IV pacemaker. They work at Children's hospital in Novosibirsk where Dima Parmenov is currently hospitalized and where Inna Shakhmyeva will be brought for surgery. They will also travel to Archangelsk for Lisa Kuchina's operation.
For various reasons, mostly financial, we cannot go with our children for treatment abroad, and there are no specialized clinics for children like ours.
The training itself is free (we are very grateful to the German doctors!), but the air tickets, visas, interpreter services and lodging will cost 120,000 - 150,000 rubles.
We are very hopeful for your support and will be very grateful for any help!

Respectfully,
Shakhmayevs, Parmenovs and Kuchins families

Update as of April 1, 2010. The travel date for (Dr. Kafanova) and (Dr. Sirota) for their training in Munich, Germany was set for April 13th. We urgently need to raise money for their travel expenses!

Update as of April 13, 2010. After surgery we will need to buy the following equipment:

- Oxygen concentrator Bitmos Oxy 6000 - for 47,000 rubles,
- Ultrasound inhalator (nebulizer) 402A1 - for 2,200 rubles,
- Bed (BDH 03 ARMED model) - for 18,000 rubles,
- Portable medical suction machine 7E-d (AC/DC) - for 7,200 rubles,
- Recirculator / radiator ARMED CH-211 (metal body) with base - for 3,300 rubles.

We will be very grateful for your help!
Dima's mom

Update as of April 20, 2010. The doctors have finally returned from training in Germany. They flew there without a problem, but the return trip was quite an adventure.
Due to a volcano explosion, all flights from Germany on April 16th were canceled, and the doctors had to get to Moscow by several trains. They then had to order new air tickets from Moscow to Novosibirsk, which were additional expenses.
But most importantly, the trip was necessary to ensure our children's safety.
Evgeniya, Inna Shakhamaeva's mom

Update as of May 18, 2010. On May 17th the long-awaited certification of Mark IV breathing pacemaker was completed. Now our children can finally have surgeries. Dima's and Inna Shakhmaeva's surgeries are scheduled for May 31, and Lisa Kuchina's - for June 3-4.
After the surgeries, they are planned to have two months of rehabilitation.
We are enormously grateful to everyone for their help and support!
Evgeniya, Inna Shakhamaeva's mom

Update as of June 8, 2010. The surgery was postponed due to issues with customs. The equipment is held up at the customs.

Update as of June 9, 2010. Dima's mom managed to get the equipment! The surgery is scheduled for June 11th.

Update as of June 18, 2010. Surgeries for both children, Inna and Dima, were successful. Inna had one stitch less than Dima, as doctors came up with a new method.
I am amazed how strong our kids are! Until tomorrow, Dima and Inna will be in the same room. Zhenya (Inna's mom) and I are in constant contact.
Dima's stitches are healing gradually. Inna has a bit of swelling.
The issue with artificial lung ventilation equipment for home use was solved. I am glad I've written to the regional governor. The administration will buy the device for the hospital and it will be transferred to the clinic at our place of residence.
I talked to a representative of Drager, a firm that manufactures ventilators, and he said that it can be used to try to get Dima to breathe by himself at home. Dima has a chance for success because Mark-IV will strengthen and train his muscles and with a home ventilator he can learn to breathe by himself.
I spend more time with Dima now, as I am on vacation. I can really see the difference that it makes. Dima has mental problems now once he is at home I will try different treatment methods. I plan to visit Human Brain Institute in Yekaterinburg to seek their advice.
I will now work on Dima's individual rehabilitation program and various support supplies that he needs. Insurance may cover most of the cost if I apply properly.
Dima will start intensive rehabilitation in early July. I hope that by the end of August - early September he will be discharged. Finally, we are able to celebrate fully. The day of Dima's discharge is approaching fast and this is great news!
Olga

Update as of July 5, 2010. We are doing well. Today the doctors will start helping Dima breathe, for now once a day, and then twice a day, with gradual increase of breathing time. Hopefully, the pus in his lungs will start draining. I don't know how he gets it when he is on constant antibiotics.
Inna is starting to get better, and she even walked a little. However, there is always a threat of pneumonia, just like for Dima, and it is hard to prevent.
A few days ago I visited a boy who got the device 18 months ago. The effect of home care was obvious, and I feel optimistic now. As soon as we move back home, I will get in touch with Brain Institute in Yekaterinburg. Dima will need their help.
Olga

Update as of July 6, 2010. Today I saw how the breathing procedure works. Dima did well and fell asleep right after. Today he was breathing on the device for an hour, and tomorrow he will do it for two hours twice a day. I hope it is not too much too soon.
Inna Shakhmayeva will have a surgery tomorrow to tighten electrodes. So we are now a bit worried.
Olga

Update as of October 30, 2010. Thank you so much for the equipment, especially for the bed - it is very comfortable!
On September 20th Dima was discharged from intensive care unit. Hurray! We are at home! A new stage in our lives had begun. We are getting used to home environment. Dima is not yet completely used to the stimulator, so we are continuing training exercises. We try to live without antibiotics (for the last two weeks) - the last three years Dima was injected daily.
I am now helping Dima adjust all the time. I applied for the early retirement. It is a bit difficult, and I have not left home in weeks, as Dima cannot be left alone. We now have emergency care at home. The doctors from the local clinic came to visit us and they were shocked. No one can imagine how it can be possible to live at home without breathing. But we stay strong. Dima is a real fighter. No one knows how to treat him further, so I wrote a letter to Brain Institute in Yekaterinburg, but did not get a response yet.
Thank you very much for giving us the opportunity to live at home! Dima says hi to everyone.
Olga

Update as of September 29, 2011. Dima is gradually breathing longer and longer and sometimes he can breathe for 18 hours by himself. I still cannot believe it!
With the help of intensive care specialist and thanks to a business, Dima got a wheelchair. He can now move around our apartment. Recently it was still warm and he was spending time at our balcony (it is glassed over).
One more remarkable thing happened! Yesterday Dima took a bath. Even 4 months ago it seemed like utopia. I was even more happy than Dima. He is really astounded that no one is as careful with him as before and he is being turned this way and that. In 4.5 years it was his first time in the bathtub!
Dima is growing fast - he is even sporting a beard. Soon he will turn 18.
Now all my thoughts are about further steps and additional therapy. There are no patients in a similar situation in Russia, according to the chief intensive care specialist. Most importantly, Dima is improving and all our efforts weren't wasted.
Dima will prove that there is a place for miracles in life. He is sending his greetings to everyone.
Dima needs a gastrostomy. Last time we got a good one, made by Tyco. And now it is being renamed and there are no deliveries. In Russia no one makes gastrostomies, and Dima really needs one.
Dima's photo
Olga

Update as of October 15, 2011. The gastrostoma issue has been sorted out. I wrote to Marina, president of the AdVita USA fund, she found the manufacturers and gave me their email address. After lots of negotiations they finally agreed to ship a couple of gastrostomas - normally they don't supply them to Russia. So in a month we will have a gastrostoma!
Olga

Update as of October 26, 2011. Dima and I would like to express our sincere gratitude to AiF - Kind Heart fund for buying a hoist. It is a very important piece of home care support for us! Dima can now get into the wheelchair by himself, as it was very difficult for me to do it.
Olga

Donate online >>>

Wire transfer to AdVita Charitable Foundation bank accounts

  * - Please specify your name and how we can keep in touch with you. We also need the letter from you with the following data: your full name (name of organization), address, phone (fax), goal of donation, date, signature (seal).
Please use on of the following applications: in russian, in english, in german.

** - If money amount are transfered by the third party we kindly ask you to show in the letter which firm would transfer the sum of money (by our request money transfer would be performed by firm....

If you would like to transfer money through Western Union, please contact site administrator.

If something wrong in the table below or you don't see reference on your donation, please keep in touch with site administrator.

If you would like to help us collect money for Dima's treatment, please e-mail to the site administrator and write your name, or company name, payment number, time and place of money transfer. This information will help us to account for money collection and inform you about every donation. Please don't forget to tell us about your donation. We need to make sure that every donation reaches its intended recipient.

Other Dima's photos

List of Patients

Search: