11th month begins since Eli is in hospital. 11 months on systems. This isn’t normal. It is normal the patient to be able to go home and continue parenteral nutrition. At least this is normal in other countries. Eli has been long time capable to set up the systems and to wash them on her own. She has a physical ability to sleep in her own bed at home, to go to the mountains, even to work at home. In other words, she has physical ability to be free. But she doesn’t have the legislative base to be free. According to National Health Insurance Fund, parenteral nutrition is food, but not a medication. The Fund assigns funding only for medications “that are in tablet forms”. Now, do you get it? If something that is in liquid state, but saves the life when poured through the systems’ hoses, cannot be paid for because it is not in a “tablet form”. Gentlemen from National Health Insurance Fund, the law has a word, but it should has also a “spirit”. This nutrition costs 12 000 leva a month – this is the cost of Eli’s life.

National Health Insurance Fund sent us to the Ministry of Health. The people from the Ministry (as usual) try to convince us that they are doing their all best. And this goes a week. Month. Many months. And this is not only for Elena, there are many other people on parenteral nutrition, whose destinies are left to the imaginations of their doctors. These doctors try many different ways to provide life-saving parenteral nutrition. In addition to that, we help them with payments from Eli’s charitable account. It is good that we, Bulgarians, help each other. Eli wants to be at home for Christmas, with family and friends. There shouldn’t be a logical reason for this not to occur. The money for the parenteral nutrition come from the state, anyway – why Eli is forced to stay in the hospital for to receive life-saving medications and nutrition? Maybe we need to start negotiations with the producers of Cabiven to make it in “soluble tablet form” so that our National Health Insurance Fund can be satisfied?

Let’s comment the Eli’s state. Her intestine, as we have already mentioned, is already widened up to 8.5 cm in September. Wider intestine is good, from one hand, because it provides more material for lengthening. From other hand, though, it presses other organs and creates pain. Eli is feeling this pain. The STEP procedure will solve the problem. But the problem is that we are still discussing the offer with the hospital in Boston because it doesn’t contain yet all the expenses.This means that we are going to have to show the Boston's offer among the Bulgarian institutions and to wait for their answer. Having in mind that in the Ministry of Health and Nation Health Insurance Fund and even the Ministry of Finances, the authorities at all levels are very aware of Eli's case, we hope for quick answer.

Except for the pains, nerves, hospital, ambiguity - Eli is fine.

The funds that has been raised so far amount 75,000$. Each month about 1300$ have been spent for medications. These money are from text messages and donators.

The offer from the Eli's STEP procedure has arrived.

The cost for the Short bowel syndrome consult and for the surgery itself is 338,000 $ (documents). After all, this is the best option we've been praying for. This price is lower than the one for transplantation. The State is willing to pay more than 300,000$ for transplantation. Unfortunately, this funding are assigned only for transplantation and cannot be used for the STEP. The Ministry of Health have been aware of STEP expenses for a month and issued a positive statement regarding expense coverage. The problem is that although that confirmation for granting this funding has to be issued solely by one person, namely the Minister of Finances, Simeon Dyankov.

In addition to the expenses mentioned, we have to add also the current expenses for meications (9000$ monthly; part of these expenses have been provided by Military Medical Academy, the rest have been paid from Eli's charitable account); airline ticket expenses; accomodation expenses for Eli and her mother, Emi.

At last, it is very probable that Eli might need second STEP procedure 7-8 months after the first one, for another 338,000 $.

For comparison: for the STEP surgery for the little George, Bulgarian goverment granted 200,000$.

And now we expect a long waiting for the ministries feedback.

After that we are going to start talks with foundations and companies.

Eli and her relatives have accomplished everything that was up to them...

We have been wxpecting the offer from the Boston's Hospital. For now, we have confirmation that the hospital will accept Eli for STEP consult.

Financial Minister S. Dyankov has been given a request from us and another from general Tonev parenteral nutrition and STEP procedure to be covered by the state. The requests had passed many tables in different institutions, and the answer was always "yes", or, to be more specific, "yes, but...". It is wierd, that the financial minister has to handle the case personally. But if this is the way for Eli's problems, he will have to handle the problem. If necessary, even Brussels will be involved.

So, we wait for the answers. We took a rest. The rest is over.

Eli is fine.

We will keep you informed.

What's next?

First, Eli has been in excellent condition lately. This weekend she roasted papers at home with friends. Of course, this excellent state is not her permanent one - days ago, she had been very tired. However, she manages the weakness and she is full of hope.

Second, in a few weeks she should be able to go to Boston for the short bowel consult. This is important for Eli to know if STEP is possible. The STEP procedure involves lenghtening of her 50 inches long intestine, because it cannot be prolonged naturely, but it naturely widens. Because her intestine is wide enough, it is possible to apply surgical lenghtening of the intestine for the expense of its diameter - STEP instead of transplantation, and this is very good news! Three months ago, we didn't have any hope for this option. Now we have very strong hope. The alternative variant is Eli to leave for Bologna where she will have to wait for her donor and transplantation. We want to remind that the state is willing to pay 300,000 $ for transplantation of about 70000-15000$ has to be raised by charity. However, if STEP procedure is possible, the negotiation with the Ministry of Health have to start from ground zero. STEP surgery most probably will be more expensive from transplantation. The price will depend on STEP consult, and on our negotiations with Bostan's Children Hospital.

Third, we have been trying hard for Eli to be allowed to go home. For this to happen, National Healt Insurance Fund has to pay her parenteral and enteral nutrition, about 9,000$ a month. So far, most part of these 9000$ have been a gift from Medical Military Academy, however, the portion of this money that has to be paid from Eli's charitabel account is going to increase. For a detailed information, please see the new documents.

On 8th September, thanks to a generous donation from Atanas Vesirev, the overall sum in Eli's charitable account has reached 100,000 levs (75,000$). We thank to everybody who helps us!

We are thankful also to all companies that donated in the last month more than 10,000 $ - Vivacom, OMV Bulgaria, and the biggest donation we have received so far comes from AVAIR.

Eli is fine, although she keeps loosing weight. she feels quite week almost all the time. She is still so smily and pretty, despite of the fact that she lives like a ghost... She spends all her days in the same manner:
she's nervous, she sleeps a lot, but she does what she has to. At the moment we expect the doctors' decision for what is going to happen next - there is a promise from Militarty Medical Academy for holding a news conference on Eli's case. Than we are going to have clarification on what treatment will be possible and how much funding will be needed.

The Eli's state is excellent, her indicators are better than ever, even than before the surgery in January. The parenteral nutrition has been lowered to minimum, and at the moment there is no life danger for her. Her state is phenomenal, nobody among the doctors have expected this. She feels pain when she eat in a normal way. Despite of this, she tries to eat constantly. She gets inconcious frequently, doesn't absorb the vitamins, and she get cramps all the time. The biggest problem for her is the dehydration. She doesn't adsorp water almost at all, and especially during the hot days, this makes her extremely weak. But she is fighting!

Eli will not leave abroad in the next couple of months. The reason is doctor's prescriptions rather than lack of funding. The doctors promised to explain in details what happens to Eli on a news conference. We approach the goal regarding the raise of funding. Vivacom expressed significant support for our streetball tournament, and after that they will make a strong donation. Thus we will exceed 45000 $ in the charitable account. Today, during the Spirit of Bourgas festival, the band Sub Zero Farm will be waving Eli's banner-"talisman" during warming of the public for "The Prodigy" band. We discuss the next charity events, and try to contact the foundations around the world...

Elena, we are not going to betray you.

Eli keeps fighting succesfully and somehow her body manages the weakness. She feels pain, a lot of pain. But in the next moment she laughs, and this relaxes us. For now we don't have a lot of news, therefore we are going to show you the content of some of the letters that reach us. We apologize that we don't have time to answer all the letters, but every good word gives us strength:

"Today, on the site save-darina, I got to the Eli's site. I think the words cannot be found for person to express his feelings when reading about Eli. She is so smiley, beautiful, life-radiating, she is simply like a Sun in a human shape!... ...I'm going to follow her site with great hope and with anticipation for the news of her transplantaion. This will bring Elena back to normal life, which she deserves. Special greetings to strong Elena!..."

"...People have been chasing their vacations and live in imaginary reality with phrases like "maybe in the autumn, when there are more people". What does it mean, "in the autumn"? Or maybe I'm too tired for to scream and to bang fist on the table, while waiting for somebody to accomplish something. I was wandering how I can effectively help Eli? What is this thing that I can do in a best way and can help raising more funding for Eli? Every day I've been watching the people around me when going to work and making all kind of dramas during the day for minor reasons. But Eli is smiling and she is fighting. It's a confused world. My boss spends all the money Eli needs in a few months...
...I can't get to the all charity events, but I try my best every day and pray for things to get better. And I know that it will happen. Because of Eli. Send my special cheers for her! I hope I will be able soon to help more!"

„...A person has to feel priviledged if he is in a position to help..."

Five months passed in hospital for Eli, and the sixth is starting.

It would be good to say that much happened. That Eli is going to travel and everything is alright. But it is not. It seems that everything is just starting.

For five months, Elena sleeps in a bed space, if she is lucky to sleep at all. Five months she eats and drinks water from 10 inch long needle, stuck in her chest. For five months, every second day they come to cut something, to inject something, to stuff her with medicines, to pass her through 1000 examinations. Five months, one hundred fifty three days, 3672 hours, awful hours full of pain... and that small, beautiful girl is smiling in front of you and is trying to calm you, to convince you not to worry. Strange world...

Five months of bureaucracy and pleading for help. Five months ago we didn’t know if there is something, that can help Eli. Now we now for sure there is a highly successful treatment. The institutions did their part, checked carefully what does the law allows, they’ve paid it, and for everything else they said: feel free to help you self.

And it seemed everything’s ready, but it’s not! Where to find 75,000 $? We do our bests with concerts, exhibitions...
...but everything is up to you, who read this.

Send an SMS. Help. Put a poster at the enterance of your home. Put flyers at your office. Come to the next life music party. Call your rich aunt. Put a box in the bar, where you drink beer in the evenings. Put a “help-eli” sticker on your car. It’s not hard to help, it’s not even expensive... A human life does NOT COST 75000 $!

It is five months.

Lets show few good news. If these news are not exactly good, at least they are ful of optimism.

First, Eli is fine. The body of this girl is phenomenal, the doctors reduced her intravenous nutrition for to protect her liver. They give her all the time normal food and hope that the remaining 50 inches of small intestine to absorb something. For Eli, the normal type of nutrition is very painful, but the results are very good; her organism shows unexpected resorbtion and her condition is very good at the moment. She learnes Italian and she will finish the first level next week. She keeps smiling altough she is in pain.

Second, two foundations supported Eli, and this is grat: Bulgarian foundation "Kiril Vajarov"and Italian foundation "Raina Kabaivanska". we are very thankful to both the organizations. This means a lot for Eli. As a begining, due to foundations, there will be tax reliefs for her medical expenses, and all the medications we buy through her charity account will become cheaper with 10-30 %... Our "political activities" do not ceases as well. We are fighting for every possible help from the state... and we do not intent to stop.

We hope that Eli is going to go in Bologna in August... the only thing we need is enough funding.

In the coming days, we are going to organize the following events:

18th July: bands 1967 and ShowBizz with Denitza Georgieva from Music Idol 2 in Swingin' Hall
24-25th July: the second edition of open photo studio for Eli in the South park, Sofia
25th July: Q-Check (punk-ska), Kaya (punk-core) and 4х4 (funkygroove) in Swingin' Hall
7-8th august: Streetball tournament in the South park, Sofia
7-8th August: third edition of open photo studio for Eli in the South park, Sofia
7-8th August: open exhibition, I. Konsulova - Butzi, Mariyan Tzenov, Catherine Bourova on the trees in South Park, Sofia

It will be a Transplantation!

According to the Bologna team, Elena's body manages well with the situation, and the total parenteral nutrition (TPN) is still not injuring her organs. This mean that instead of urgent transplantation, a suitable donor will be sought for. TPN makes problems, and in half of the cases is hurting the patients. This might be a reason for urgent transplantation, in which the donor is not 100% compatible with the patient organism. This makes the risk for organ rejection very high, but lowers the risk for the TPN to injure irreversibly the patient. However, Eli surprised the medical community once again, by not showing a sign for TPN related complications. Therefore, they will search for a better donor... but she will wait longer.

Tommorow in 18:00, Eli will come back to Sofia.

The reason is that, at this stage, she cannot afford to stay in Bologna. The TPN is too expensive, the charity funds gathered are not enough by far, and nobody knows for how long will Eli wait for her donor. After the transplantation, one year stay in Bologna is compulsary, on the account of Elena's family... We cannot think for a stay in Bologna before the question with this year is resolved.

We will search for solution here. The Executive Agency for Transplantation may organize transport with military aircraft for Eli. Unfortunatelly, the small intestine is the "fastest" organ: from the moment of the phonecall to the moment when Eli is on the table for the surgery, the maximal time is 3 hours. This is a great risk.

From September, Elena will be a student in Bologna, which will ease the task very much. And we will throw a lot of strength in the charity campaign, and let's hope it helps...

And so, the battle is just begining.

Elena dealt with her part terrifically.

Last night, in 1:00 pm Elena arrived in Bologna. She was hospitalized in St. Orsola-Malpighi for pre-transpant evaluation. Her mother Emilia travels with her, and also her physician, M. Simeonova, who look after Eli in the last few months. Doctor Simeonova will stay for a week, and Elena and Emilia - as much as needed.

The most probable decision of the physicians team from these evaluation will be that Elena is suitable for intestinal transplantation. In such case, Eli and Emilia will stay in Bologna, in accomodation near to the hospital, having constant medical supervision, until our Sunbeam girl waits for her donor... which might be a day or an year. This stay will be funded through Elena's charity account, while this is possible. After the transplantation there will be a two-months stay in hospital. Both this stay and the transplantation itself will be funded by the Fund for Transplantation. After this, one year more will follow, for which we once again hope for the help of good people.

The less probable and better decision for Eli is the second one. What is left from her intestine have shown "good behaviour" in the last few months, which raises hopes for other variants, which will not be commented here due to our superstitions... but Bologna's physicians will decide.

And Italian doctors are very kind. The hospital room is not realy luxorious (especially after the great conditions, which Eli had in the Military Academy in Sofia), bur this is not a great deal. The TPN pack, which we paid from the charity account, allows Eli to walk around, only if it was not so heavy...

This is the news. Next follows the gratitude for so many people, without who these first steps toward Elena's salvation couldn't be made: the Military Academy team, the Executive Agency for Transplantation and the Fund for Transplantation (even though we hed disputes), PRO.BG, news.bg, APKD, the Italian Embassy, and so many more people, known and unknown, who was helping and still are helping...

Finally some progress !

After 115 days of bureaucracy , on Monday Eli is leaving for preliminary examinations in Bologna. From now on there are two scenario:
If the examinations confirm that Elena is ready for transplantation, the Fund for Transplantation will cover 250 000 euro which includes the transplantation, registration in donors list and 60 days stay in clinic after transplantation. All the rest of expenses after these 60 days have to be covered by Elena. The amount of these expenses depend on her condition and in the best case will be about 50 000 euro. We all are trying to raise these money !

If these examinations confirm that there is a better solution than transplantation (not very probable), we will start another battle with the government, from zero. This is because the Fund for Transplantation doesn’t cover anything that isn’t transplantation.

Eli is smiling, but is also a bit afraid. Tomorrow there will be a concert in Student City – Petsko and Peci Pecito in the club “The Mask”. On 29th of May, Saturday, there will be another concert in “Sofia Live Club” under the National Palace – “PIF”, “VOXX” with Dicho and Lubo from “Te”.

Yesterday “Jeremy”, “PIF” and “Ostava” made a great concert for Eli, there were some 150 people in the club “The Mask”. There was a surprise, too: the band “VOXX” with Dicho came also. Eli managed to come for half an hour and got in touch with all these great people. Their gesture was great, the music quality even greater ! Many, many thanks !

Today, from Italy, the contract was sent back because few more clauses should be inserted. The contract was sent to Italy last Friday. The ball is again in the EAT. Let’s see if they are going to do anything by the end of the week. We are trying not to be nervous, but it is very, very difficult. When, the hell, there will be a date for preliminary examinations ?

In the bank account there is already 15 000 euro. Also, 2500 have been spent for medications and bag for total parenteral nutrition. Soon we will inform you how the problems of medication politics in Bulgaria affect Elena, which is one of many patients. This site will have also the list of expenses.

Time is flying by and the news are one and the same – we are waiting for some letters, some institutions, some people are promising and promising, and trying to convince us that work very hard for us. Each letter happens with so many efforts, troubles and scandals. It took 4 months to get 10 letters ?! And meanwhile Elena is described as an urgent case !

Hundreds of people help us, but even the most elementary thing hasn’t happened yet – the preliminary examinations in Bologna. We even don’t know what is the best treatment for Eli, how much money will be needed.

Now we wait for a date from Bologna. Next week.

Every week we wait the next week.

Eli is in great shape, feels well and is smiling. She lost her intestines 3 months ago and there is still no concrete result from our efforts. Last week she had often increased temperature but now her indicators are excellent. Obviously she has good doctors. We are waiting for the news from the Public Counsel and the next portion of bureaucracy. After this meeting there will be next heroic effort by the EAT to sign the contract with the University hospital St. Orsola-Malpighi in Bologna. This contract, however, will become possible only after finalizing all details regarding expenses – the Bulgarian state will cover part of them, the rest will have to be paid by Elena’s relatives. Meanwhile we are trying to raise additional funds in any possible way:

After angry protests of Elena’s relatives at institutions, with the help from newspaper 24 hours, the Public Counsel will be established urgently, probably on Wednesday, by the prime minister. It is very nice that our protests are heard by the governing people. However, is this going to be our last protest ?

The Public Counsel has absolutely the same function as the other three specialized commissions at the Commission for the medical treatment of Bulgarians abroad. These commissions stated on 5th February that there is a need of urgent life saving surgery abroad. It is annoying that opinions of famous surgeons like Prof. Dimitrova and Dr. Belokonski aren’t enough. Moreover, Dr. Vladov clearly said one months ago that there is an urgent need for transplantation. Why his opinion is needed once again at the upcoming meeting ?

Meanwhile, the clinic in Bologna for the second week doesn’t get responses to their letters. From now on there should be clarification with Bologna what will be covered by the Bulgarian state and what will be covered by the charity bank account. However, we hope that responsible office workers will finally complete their duties – and then we will thank them sincerely.

We thank Nelbo engineering which provide building for our art exhibition on 4th May. We need such an events in order to raise the funds that government doesn’t want to ensure. Eli is getting nervous, sometimes her temperature increases.

After a conversation with office worker from Executive Agency for Transplantation became clear that in order Elena to be sent in a foreign clinic there must be an approval from EAT and from so called Public Councel at the Ministry Counsel, which STILL DOES NOT EXIST ! This counsel has to be established from now on, although since January we have been told that there aren’t any problems from Bulgarian side. Now the clinic in Bologna has the readiness to get Elena as soon as bulgarian state guarantee the financing of transplantation. But when all needed counsels and structures will be constitutioned ? Meanwhile Elena lives in MMA.

Yesterday Elena took her first real shower in the hospital, 74 days after the surgery ! She was so happy she was talking about how great was the shower and how wonderful the shampoo smelled. The question still remains as to when she will have her first food.
More good news: staff at the Military Medical Academy found for her a backpack for the parentheral nutrition. device. Although it is heavy and Eli carries it with difficulties, it allows her to stay outside the hospital for a few hours. If she feels well, soon we will take her for a short trip outside of Sofia.
The last details are being determined now with the clinic in Bologna. Perhaps by tomorrow we will have a better understanding of what expenses will not be covered by the Bulgarian state, and exactly how much money we will need to raise from our supporters. We still don't have an exact date for Elena's legendary preliminary examinations, but we expect she might need to leave at any moment.
Elena has been strong, although there isn't a week without some problem. The University Hospital of St. Orsola-Malpighi in Bologna is almost a certain place for transplantation. The Bulgarian state will cover all expenses required by the law. So far, from fundraising we have collected 24000 leva. This is the result after 74 days.

This morning around 9.10 am we received an official document from the Executive Commission for Transplantation stating that the Bulgarian state will cover the expenses in Bologna. These expenses include registration in the Italiabn donors list, the transplantation itself and the 60 day stay in the hospital required by law. This document can be viewed in the documents section on this site. According to our data, the whole stay in Bologna may vary between 300 and 600 days, depending on the patient. Of course, this stay isn't all the time at the hospital. For all the medical expenses within the period after the 60th day, we will have to rely on the people's good hearts...

Tomorrow - another meeting, this time with the french consul.

Elena is leaving her hospital room every second day for a 2-3 hours (this is how long she can withstand without infuses). Today she went to a press conferense on transplantation in order to see all the people from the Executive Commision for Transplantation. Everybody was astonished. Elena smiled at the cameras, was in a good mood... and was looking at a cup of coffee given to her from the TV guys as a treat , but she couldn't drink it. We talked again with the Executive Comission regarding when and in which clinic Elena will have the transplantation and they assured us that there will be some clarification soon.

Today Elena again had a walk outside the hospital room. It is obvious that she has a strong desire to be part of the outside world.

Today Eli had another surgery … her central venous catheter became unstitched and doctors had to replace it with a new one. It was very good that the doctors reacted on time. Her whole arm is drawn away, it was very painful but a few hours later Elena was again in a good mood. The new catheter is ultra-modern, but it is very uncomfortable. Frequent problems with the catheter are indications of unbearableness towards total parenteral nutrition (TPN) and it means that we have to hurry with the transplant. We need to rush the transplant because of the familial polyposis, as well. This isn’t our fabrication, you could check here if you wish: http://intestinaltransplantassociation.com/?cat=46. Here are some chosen passages from this site: “Diseases, leading to the need of small intestine transplant… 4. Desmoid tumors or familial polyposis. Many children and adults do well on total parenteral nutrition (TPN), and transplantation may not be indicated for these patients. Transplantation, however, is a potentially life-saving option for patients with intestinal failure who cannot tolerate TPN or who present with limited venous access.”
We also would like to clarify a delusion – TPN is an extremely expensive procedure and the transplant is the cheaper option. So please, dear officials, do your job.

Elena has already achieved heroic progress. She has made two trips to the benches in front of the hospital. Doctors allow her to drink a few liquids, in addition to water. You can’t imagine her face after the bullion. She has lost a lot of weight, but for now it isn’t dangerous. She dances with the post holding her systems and doesn’t stop smiling. She speaks mainly about food and wants to enroll in a cooking class after the transplant.

We would like to thank everybody who came for the opening of the exhibition of the kids with transplants. Please visit the exhibition; it will continue until March 24th. During the festivities, it was difficult to hear about Elena’s needs, so we will repeat them here:
1. We have promises, assurances and very little documents confirming that the Executive Agency of Transplants and other related organizations will uphold their responsibilities, including:the timely organization of preliminary examinations and the transplant, coverage of main expenses of the transplant and the 60 day stay in the chosen transplant center, and simultaneous training of needed specialists (initial information is for one gastroenterologist and one rehabilitator) in the very same transplant center. We haven’t seen any real development for 7 weeks.
2. In case of a bad scenario, Elena will have need for urgent expenses in addition to the ones that the Ministry of Health has to ensure. For example, sometimes there is a need for a year stay in the hospital with many different additional expenses. Thus, Eli might need these further expenses.

Happy Birthday, Eli ! We all wish you a successful transplant.
She’s been receiving gifts all day, doctors and nurses from MMA made a little surprise for her.

Today Eli got a noble gift from a few flower shops-they agreed to set up fundraising boxes. If you wish to help in such a way, please go to: Lozenets, at the corner of streets “Saint Forest” and “J.Bourchier” (against Faculty of Mathematics and Informatics);
Orlandovci, street “Mara Buneva” 48
Vrajdebna, near the townhall.

Eli is incredible. She will probably get into the history of small intestine transplant as the most resilient patient. She does longer walks in the corridor and she is waiting to be allowed for a trip to the benches in front of the hospital. 40 days since the surgery… Right now the hunger and the sluggishness of the institutions are the things that mostly torture her. Eli hasn’t tasted food for 40 days. Parenteral nutrition obviously can’t mislead her stomach. She is losing weight.
Eli has internet but it is very difficult for her to use it. She simply can’t sit in the bed or find another painless position so that she can write. And meanwhile we have found out that the Paris clinic was ready to see her for preliminary examinations on March 1st. This didn’t happen because of the lack of organization. Probably you are asking as well:
WHY ARE THERE NO ORGANIZATION EFFORTS ?

Eli wishes everybody: Health, Love and Luck. More sport activities and less harmful habits. And we should never forget that love is health.

Eli soon will have access to the internet, so look for her online. We have good news from her doctors: they say that Eli is ready to leave for Paris for preliminary examinations. This is great. What isn’t great is that the MMA, the Paris clinic and the Ministry of Health haven’t been able to coordinate her departure. We are begging these institutions to come to terms, and are trying to help them in any way possible, although it’s probably not our business. We are looking for assistance from everywhere, but things are slow, as usual.

We are thankful to all of you who participate in Eli’s campaign in one way or another. This campaign is our main weapon to secure not only funds, but also the fast organization of the transplant as well as the conditions our smiling media star will have to live with after the surgery…

After extensive conversations with doctors and surgeons from Bulgaria and abroad, with the Ministry of Health and health journalists, we were advised not to remove Elena’s fundraising bank account from the site. The transplantation expenses, which are mentioned in the clinic’s offer, won’t be the only medical expenses Elena will need. It is difficult right now to figure out how much unexpected expenses will be needed, but it will probably be tens of thousands of euros. In the event that there are no major complications with Elena, there is an an agreement with the Ministry of Health that all remaining funds will be used to purchase medical equipment for other people who need parenteral nutrition, and for dialysers for hundreds of people waiting for kidneys transplantation.

Eli had a very tough week. She contracted a stomach paresis and had a stomach-tube almost the whole week. She also had technical problems with drainages, and suffered another series of painful procedures related to parenteral nutrition (doctors put a huge silver abokat through which Elena will be fed during the next months). She is unbreakable though. After avoiding death, after laying in bed for a whole month, after 29 days of continuous pain from knives, needles, doctors, nightmares, uncertainties, seizures, and tubes sticking out of her – she continues to smile, to feed the pigeons at her window with cookies. She also continues to talk about food - poor Eli is starving for tasty food! Her stomach-tube was finally removed today, and she is no longer having problems with drainages.

We all love you, Elena !

It is finally clear: Elena will have her transplant in Paris !

The moment she is stabilized, she is getting the plane and going for required examinations. Most probably she will have to wait for a donor for some time (usually it takes about a month and a half). After surgery, her anticipated stay in the Paris hospital is about a six weeks. The clinic’s reputation is magnificent. They say that in the last few years, there has not been even one single organ rejected. The clinic has performed 17 small intestine transplants, including a pregnant woman. In addition, they have performed hundreds of successful transplants of other organs.

Much financial pressure has been relieved due to the MMA’s approval to cover the cost of the surgery itself. It took 25 days for the government, clinics and all of Eli’s friends to organize the transplant. At least 51 people have been calling, writing letters, reading sites and documents, and organizing events- all in support of Eli.

As of now, Eli is in the hand of god and her team of doctors.

Eli is happy and calm. Her condition is still unstable, but she is in good spirits and feeling better and better. Unfortunately, she will have to stay in MMA until the transplantation or at least until the parenteral nutrition is possible at her home (we are still not aware of what are the obstacles might be, beyond the financial ones). No decision has been made regarding the city in which the surgery will be performed. Surgery in Paris has been completely organized; but we are still awaiting responses from clinics in Bologna and Birmingham. The date of the transplant has not yet been set. MMA is insisting that Elena to be moved to a clinic with experience in parenteral nutrition, and that the surgery be performed as soon as possible. At the same time, a few world renowned clinics are suggesting that Elena must first be stabilized before the transplant is performed. There are also astronomical financial issues that must be taken into consideration, given the cost of parenteral nutrition.

The Ministry of Health decided that the government will cover all expenses for the surgery in the clinic with the most affordable price. After so many gossip and stories, we were pleasantly surprised to realize that government institutions work much faster than the world renowned clinics we are in touch with. We are thankful for this. There wasn’t a faster or better option for Eli. The participation of government institutions significantly facilitated our contacts with clinics and their procedures. Most importantly, the support of the MMA has given Eli a great deal of comfort and improved her outllok.

We would like to reiterate that all contributions to Eli’s bank account will be spent only on Eli’s treatments. For example, expenses like medications, medical apparatuses, unexpected check-ups, and rehabilitation. In the next few years Elena will need these funds due to the significant amount of time she will have to spend in a foreign country. The government will cover the clinic’s cost, which includes the transplant, her extended stay in the clinic, registration on the donors list, parenteral nutrition and all expenses related to her rehabilitation period. If Eli has good luck and everything goes well, the non-spent funds will be donated to others who are in need of transplant surgery. Elena herself will use some funds remaining after previous transplant surgeries with other patients. Every cent spent in the course of her treatment will be documented and published on this site.

We ask that all of you who love Eli continue following this site, because her story is just beginning…

After a meeting with Stoyan Alexandrov, chairman of the Committee for treatment of Bulgarians abroad and a discussion of Elena's case, he came to the following conclusion: The Committee thoroughly agrees that a transplant must be made but it has no money and it awaits for the creatin of the mythical "Fund". The same fund we so weel know from the post-election campaign of Boyko Borisov. A video, advertising the Fund's activities can be see circulating on different channels: "96 millions for transplants! There won't be left any person in need without the necessary surgery!". As we understand from Stoyan Alexandrov, this Fund can be created "any time now", as if tomorrow they are going to vote it at the National Assembly... and they've been waiting for it since the fall of 2009. Parallel with it exists the Executive Agency for Transplantations that has an assigned budget but doesn't know how much it is nor ho much could be granted to Elena who, by now, is the only Bulgaria ever to need a transplant of the small intestine. They have promised that soon enough they will decide... something. We should wait! But Eli can't wait. As of today we have an official offer from the clinic in France; the total amount we are hoping to achieve is 244 258,59 €. The offers from the clinics in the USA were something around 1 200 000 $ and the government would never cover it even if the success rate for transplants of the small intestine there is two time better. We ask all that are able to help to do it!
As of today the information for the donation account is published on this website. It is made so that the money donated can only be used for Elena's treatment. In case we collect more than what's necessary, the overage will be transfered to another donation account, to another person in need. Thank you!

And yet again, we postpone all events for about a week. Something we will probably do a few more times... We can't help unless we have an offer from a transplant clinic and a response from the Ministry if they are going to finance the operation at all. But everything is holding us back - the clinics are delaying, the Ministry is delaying, the doctors are delaying... Elena needs to stay for at least a month and a half on parenteral nutrition until she is finally stable after the severe operation. And after that dozens of tests are awaiting her, and so are dozens of bureaucracy battles... And of course, finally, it's the waiting for the donor. All this waiting is so dangerous for her. Pray that she can hold on, support her so that she can hold on, help us speed things up so that she can hold on... She will hold on!

We have requested information and offers from all centers for small intestine transplantation in th world. Only eight cities worldwide have experience and success in these kind of transplant – Pittsburgh, Indianapolis, Los Angeles, Omaha and Cleavland in the USA; Bologna, Italy; Birmingham in the UK, Paris, France. What is more, in the USA they make around two-three times more transplants per year than those made in Europe as a whole!

The second week begins, busy with bureaucracy. Eli is... fine. She is trying to walk alone now, talks for a long time without getting tired. It's not like she doesn't have any problems, she just deals with them. In the next week or so, we hope to be able to get her home at parenteral nutrition (in the hospital there is a high risk of hospital infections). She knows almost everything now – for all the noise that we can bring around her case, she learned about her own website and about all the people that are following her situation. What she knows nothing of are the dangers.

Long story short, we have to wait. The Ministry of Health care will expect an official statement from the Military Medical Hospital which they didn't issue today either; they couldn't find a third member of the committee to sign the papers. Well, it could have been worse, up until yesterday they didn't even know they were supposed to issue that statement. The ministry probably wait for the offers from three other foreign clinics. These clinics also need documents from MMA and each of them needs something different. MMA doesn't know what documents the clinics want. The Ministry probably doesn't know that for a clinic to make an offer they need something more than the medical history. The media could also participate after such a decision and maybe after the opening of a donation account.

And Eli is just holding on.

Eli learned about the transplantation. Only she, herself, knows how she feels but she takes it laughingly. And knows that we will take care of everything. We finally received the medical history. We went around a dozen institutions with dozens of documents. We are trying to cut short any procedure that may delay the transplantation but what might delay it most is the lack of funding. The Military Medical Academy where Eli was operated, refused funding. Now all our hopes go to the Ministry of Health care and The Committee for treatment of Bulgarians abroad. Their promises are various – from full funding to partial, from a decision on Wednesday to decision on Friday. The pressure for us, her family and friends, is enormous. But yes, we will take care of everything. With all our powers. With any means.

Day seven. Elena is fully conscious, she jokes around and is being cute... but is totally exhausted. She even took a walk. They allow her to take in fluids – she drinks them so as to speed up the adaptation of what is left of her intestines, but she can't absorb them. It is hard for her to speak but she reads messages easily. She has already been warned that she may stay in the hospital for a long time and that she needs another operation. Tomorrow she will see her parents for 2 minutes, with masks on their faces. She doesn't know about the transplantation at all, nor know how serious it is nor what a madhouse is outside of her little room... We have no rest on Saturday. We are organizing a Facebook campaign. The people who want to join in can send an e-mail to fhri@chem.uni-sofia.bg. We search documents and laws. We gather participants for the upcoming events.

Elena is out of intensive care, she even said a few words, “Relax, mom, I'll be fine”. Elena doesn't know. Until she is informed, please don't attack her with messages (but write to her never the less) and don't mention the word “transplantation”.
From the MMA weren't able to issue the medical history today. This means that neither can we get into the donor list, nor can we send the papers to the clinics in Innsbruck and Pittsburgh, nor open a donating account until Monday. We lose three days for a piece of paper.
On Monday, there will be a meeting in the MMA after which the medical history will be issued. The funding may be possible through the Committee for treatment of Bulgarians abroad with the Ministry of Health care. This Committee will send the papers to specialists that will determine if the operation is possible, how urgent it is, if it is true it can't be done in Bulgaria – to all these questions the MMA has an answer at least. For us to provide these answers, again, another seven days are lost for another piece of paper. There is no certain commitment from anywhere and anyone... the moment funding is mentioned, it's all “We'll do everything possible” and “We'll see”.
Well, we'll also do everything possible. On Monday or Tuesday, the account will be opened. If the Ministry covers the operation, that will make things easier. We'll need to gather only money for the expensive medications Elena will have to live on afterwards (for now, we know her insurance doesn't cover them). We will state the whole amount, of course, just to be sure. All that is left unaccounted for, will go to someone else in need. And those in need are 43... 43 kids, young girls, single parents... with Eli that makes 44.
Just to clarify what we are dealing with here, my friends... the best time ever of a successful donation campaign in the history of the Bulgarian donating forum is 4 months. In case of emergency, we need to beat that time with 2 months.
God, help us!

Elena is now in consciousness, all her vitals are getting better, she has no temperature, talks quietly. She hasn't yet asked what is wrong with her but a doctor (one of ours) has a speech prepared that will inform her without a shock.

That's all from her for now, she keeps her part of the responsibilities.

Good news – most of Eli's tests are ready and are good. “Good” means that a transplant is possible and she stands a chance. Fro now on everything is about organization. Elena is out of the operation room again. That's all for now... She is stable, without a risk of her life. We are waiting for her to wake up. We are organizing a donating campaign. Emilia, her mother , had a meeting with a reporter from the Bulgarian National Television (BNT) and the Minister of Health care. We are in contact with the European Liver and Intestine Transplant Association. We are also in contact with a most renown clinic for small intestine transplantation in the world – The Thomas E. Starzl Transplantation Institute in Pittsburgh,USA.

Elena is in intensive care clinic on the third floor in the MMA. She is stable now and is able to breath herself. Tomorrow she will be isolated and awaken. On Thursday the histology will be ready, based on which we will have the medical history(documents) ready on Friday. Those documents we need for all our endeavors. The Austrians have committed... she will probably be in the hands of Dr. Johan Pratchke from Medizinische Universitat Innsbruck, Univ.- Klinik für Allgemein- und Transplantationschirurgie. We are also analyzing other possibilities – around the world there are around 40 clinics that make this kind of transplantation.

First day with good news...

For Elena to live, she needs to be fed intravenously in a specialized clinic. She can't stay long in this condition. We hope it's possible for a transplantation to be made. She is not conscious. We are in contact with Innsbruck, Austria – the most famous transplantation center in Europe.

During an unsuccessful operation, Eli suffered infarction of the small intestine which resulted in its complete removal. In the moment she in intensive care in the Military Medical Academy (MMA), with a risk of her life.