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Mira and Danil need your help

€51,674 of €56,120 goal

Raised by 78 people in 13 months
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Created May 7, 2018
Looking at this photo, it's hard to believe that these children are seriously ill...
Meet Mira and Daniil, a sister and a brother.

29712098_1527670077.9482_funddescription
Mira was born with a congenital pathology of urinary tract. Mira is 6 now, she loves and is pretty good at signing, dancing and drawing. Her favorite toys are Rainbow Dashand and Pinkie Pie from «My Little Pony». Mira is an outgoing and caring little girl, and her smile can bring light to a gloomiest day. When you look at her, it is hard to believe that since her fourth month she has been living a hospital life, filled with surgeries, drips, numerous medical procedures and endless pain and suffering. So far, she has spent most of her life in hospitals instead of being with her family.


After nine disappointing urinary tract surgeries in Ukraine, which did not help Mira but ruined her kidneys instead, the local doctors gave up on her and the family had to ask for help the experts abroad. Luckily, they succeeded to find a wonderful medical clinic in Spain specializing in urinary tract pathologies, and in November 2015 Dr.Rodo operated Mira’s urinary bladder. Since then, she lives with an indwelling catheter in her bladder and has to visit the clinic for annual check-ups. The next one is due June 2018. Medical expenses for the check-up amount to EUR 6 214.

In the meantime, in December 2017 Mira had an acute abdominal pain attack and was urgently admitted to the Kiev regional children hospital "Okhmatdet".Five months the doctors there tried to establish an exact diagnosis and eventually recommend removing Mira’s right kidney because of its irreversible failure. Due to lack of funds for having this surgery in Spain, the family reluctantly agreed that Mira to be operated on by the local doctors.


14.05.2018 Mira's right kidney was removed. The current functionality of the remaining one is just about 65 % and is deteriorating. Right now, the girl has a Stage 2 of Chronic Renal Failure and, unfortunately, there is an apparent danger of that Stage becoming Stage 3, then Stage 4, etc. At Stage 5, Mira will be able to continue living only on dialysis and she will be waiting for, we do not know for how long, for a kidney transplant...

Yet, despite these tremendous miseriesin her life, Mira bravely stands painful medical procedures, smiles and stays positive. She also dreams of having a pet, a kitty or puppy, that she could play with and care of, but so far it is just impossible.


All these years, Mira feels love and support of her older brother Danil, 15. When he was 9, Danil was diagnosed with an osteogenic sarcoma in his left upper thigh. Danil went through a lot during the next two years, firstly had surgery to remove the tumor, after that he had two more surgeries for removing metastatic tumors in his lungs, then an endoprosthesis replacement surgery was made on his leg, he also underwent over twenty chemo courses.


Yes, Danil had a lot of pain to suffer, but that unfortunately was not enough. The problem with his leg still prevents Danil from living a normal life. Before that, he used to be a passionate football player, also was seriously into judo and even won a few medals at local competitions. Being friendly, cheerful and curious, he was and continues to be one of the best students at school and the best friend forever for his mates.
 
Unfortunately, all the aspects of Danil’s everyday life (schooling, socializing,  sharing time with friends) are heavily hindered by his current condition.  It is holding him back from  normal childhood and from the sport activities he loves so much. But Danil  is not among those who surrender. Last August he took part in  the 6th Onko-Olimpiada hosted in Warsaw (Poland) and dedicated to children who cancer survivors. Danil won two medals there: the bronze one in swimming and the gold one in table tennis.  Also Danil is FC Barcelona fan. Unable now to play football by himself he longs to play their home stadium someday and get  an autograph of Lionel Messi.
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In June 2017,  Danil underwent in Ukraine one more surgery and  had a brand new MUTARS Xpand prosthesis installed instead of the previous outdated one. The money for the  prosthesis had been raised with help of great amount of supporters.  Unfortunately, this  MUTARS prosthesis has broken down recently. It’s highly likely the prosthesis was initially installed improperly by Ukrainian doctors, but there is no hope that they will make up for it.  What is more, there is a severe issue with a fistula on Daniil’s bad leg caused by staphylococcus bacteria, a very common phenomenon in prosthetics.  As a result, it has been a year since the prosthesis’ installation, but Danil is still unable to walk without a pair of crutches.
 

Recently, the family approached the Center of Corrective & Reconstructive Limb Surgery Munich (ZEM-Germany). They are professionals  who know everything about the type of prosthesis Daniil has, its installation and maintenance. Doctor R. Baumgart from  ZEM-Germany recommended the following treatment plan:
Removal of the MUTARS Xpand prosthesis, debridement and cleaning of the whole exposed area and stabilization with an arthrodesis and a spacer.
Revision surgery, if infection not to be eradicated after the first step.
Implantation of a new MUTARS BioXpand II prosthesis.
 
In the meantime, the family urgently need money for Mira’s next check-up in Spain and for her regular medical care plan (for catheters, medications, medical procedures required etc).
 
All savings of Mira and Danil’s parents are on the brink of exhaustion as they fight simultaneously for health and life of their both children. Oksana (Mum) devotes all her time to children, Aleksey (Dad) has a job and works diligently to support them financially, but his salary is not enough to sustain the medical expenses.   The parents will be grateful for any help in collecting the funds. If you have even a tiny opportunity to help them, please do it!  
 

We are launching this campaign to help Sirota family raise money for the following expenses:
- for Mira’s annual medical check-up at Sant Joan de Deu Medical Clinic (Spain) and for her regular medical care plan;
- for medical expenses for Daniil’s treatment plan in ZEM- Germany Clinic;
- for relevant travel, accommodation and administrative expenses.
All savings of Mira’s parents are on the brink of exhaustion as they forced to fight simultaneously for health and life of their both children. Oksana (Mum) devotes all her time to children, Aleksey (Dad) has a job and works diligently to support them financially, but his salary is not enough to sustain the medical expenses. All donations are welcome. Please spread this over your Facebook and Twitter friends.

Thank you from the bottom of my heart.

Facebook help-page:  https://www.facebook.com/HelpDanyaMira/
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News from mum

Dear friends,

We still haven’t got any good news. Just yesterday I was going to write that the fistula into Daniil’s bad leg is rapidly increasing and we need to have Daniil operated on as soon as possible, because at this stage the leg can still be saved and the fistula mitigated with reconstructive surgery. Once again, I said to yourself that right now we need to postpone Mira’s check-up in Spain clinic as we just do not have money for all of that. But then happened this. This morning Mira has got an awful pain attack and once again she was urgently admitted to the hospital. These attacks are continuing. And there are traces of blood in her urine. I don’t know what to make of it. Only one week ago Mira was discharged from the hospital. And now we have that.
The doctors haven’t still found the source of pain. During her years in the hospitals, Mira had been administered with antibiotics of all sorts and now she is insusceptible to them. How can she be treated now?

Just day before, Mira was so happy and joyful looking forward to her first school day. She and we were waiting so much for that day and made a lot of efforts for it: new uniform, new hairdo, new backpack, a lot of pens, pencils, notebooks etc.... but it seems that she will spend her first school day at the hospital.

I fell sad and shattered now over helplessness and inability to help my children. Tomorrow, we were going to make a coverage about Daniil, everything has been agreed, but now Daniil is home alone, whereas Mira and I are in the intensive care where journalists are hardly allowed...

I am now in such a "broken" state that it is impossible to express my thoughts coherently. And I do not know where to take the strength to continue the fight for my children. All our hope is only for you, our friends, for kindness of your hearts and for your help! Your support is very important for our family now! Please help repost and spread information over social networks. Any money we receive now is like a breath of fresh air that helps us live and fight. So I, once again, ask you - help us save our children!

I will be immensely grateful for any help! Thank you all for being with us.

Oksana Sirota
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15.08.2018 News

Yesterday, Mira was urgently admitted to local kinder hospital «Ochmatdet» with the peritoneal commissures symptoms. The previous day everything had been alright, though. That night Mira played a little bit with Daniil, watched her favorite cartoon and then went to bed. But in the morning Oksana and Daniil were woken up by Mira’s cries, she suffered so much from severe stomach pain.

During drive to the hospital and admittance procedures, Mira became very weak and wasn’t even able to walk, so she was brought to the ward on a wheelbarrow. There also was a real problem to find a bunk for Mira in the overcrowded hospital. In the end, she was accommodated in the intensive therapy ward.

The doctors there collected some samples for analysis, performed stomach lavage and put Mira on dripper. Despite those steps, Mira continued feeling very weak, she puked a few times, her blood pressure dropped to 70/50 while body temperature started to rise.

Only in the evening, when the doctors administered antibiotics to Mira, she started feeling a little bit better. Yet she is still in the bed now and continues having stomach pain. Today she will have ultrasonic scanning, we hope to get more clarification about her condition after that procedure. We will keep you updated. Many thanks for staying with us!
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Friends, we have got treatment plan from Munich. It contents 3 steps and for the first two steps a deposit 45.000€ has to be paid in advance. Without this amount there won't be any treatment. Hope we could collect money soon. Danil's leg hurts much more now, he even can't sleep well. Fistula doesn't get any smaller and painkillers don't work as before.
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Dear Friends,

We have now some news from Daniil’s dad, Alexey.


Hello, our Friends! First of all, I want to thank all of you for giving us a chance to make this trip to Germany, which was very important for Daniil, and to get an advice from the professionals who know everything about the type of prosthesis Daniil has, its installation and maintenance. The doctor we approached has been working with these prostheses from the very beginning

After all those ordeals in the Ukrainian hospitals, with your invaluable help, we were finally be able to visit Munich, the place where Daniil’s prosthesis had been produced. We were lucky to stay in a hotel right near the hospital so we didn’t use local buses with their quite costly fares (EUR 6 per ticket).

During the examination in the clinic, the medical staff made a few X-ray shots and also took some samples out of the fistula for bacteriological analysis. Then, they showed on the big screen the graphic results of Daniil’s examination and they even evaluated Daniil’s estimated maximum height. It turned out that there is a 7 cm discrepancy between Daniil’s legs, his injured thigh is 2 cm shorter at the upper section and almost 5 cm shorter at the lower section than the normal one.

The doctor offered a few solutions to Daniil’s problem, but right now the main issue we must address is a bacteriological inflammation inside his thigh. To deal with the inflammation, we need to have the prosthesis removed and then a special tool, spacer filled with antibiotics, to be installed instead. If the infection is not defeated, there will be no chance for successful treatment and restoration of the leg’s functionality.

And there is another problem. Back in the day, the Ukrainian doctors had tighten up Daniil’s thigh bone with special clamps in order to prevent the bone from further shattering. But now those clamps preclude the bone’s growth. So, they need to be removed ASAP.

All in all, our urgent actions are the following: to remove the broken prosthesis and replace it with a spacer, then remove the clamps and have plastic surgery for the fistula. It will take 3 months, give or take. The second stage will be installing a new prosthesis. Now we are waiting for a written medical report and for a medical expenses calculation.

Many of you have been with us for long time and they know how much suffering during the last six years our children have had. We would never have coped with all those problems without your help! Thank all of you for being with us!

Alexey Sirota
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€51,674 of €56,120 goal

Raised by 78 people in 13 months
No Longer Accepting Donations
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Created May 7, 2018
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