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Maxim died on February 23, 2019

 


Another Maxim's photo

Hello, an illness is always unexpected. Especially, when children get sick. Still, we still cannot believe that it happened to our Max, our "energizer" and a strong judo fighter...
Maxim is 11. In the heat of summer he caught a banal, as it seemed, tonsillitis, and in mid-September it came back. He had a blood test, and results were very bad. Our son was hospitalized at First Children's City hospital. Leukemia was suspected initially, but turned out that Max suffers from aplastic anemia - a bone marrow disease that causes it to stop producing blood cells it needs to work. Max started treatment, and during the time he had low blood counts, her got tonsillitis again, for the third time! It was treated. And then another problem - pneumonia, and caused by fungal infection at that. The doctors told us that due to lowered immunity, any infection is possible. To get rid of this kind of infection, Max has to take Ampholip that costs 10,400 rubles a vial. He needs two vials a day, and a minimal course of treatment is 15 days. It means we urgently need 312,000 rubles! And we don't know how long the therapy will last...
Max is a fighter. He smiles even when he feels really unwell. He wants to get well very much, but he needs your help. Our family cannot raise this much money. We have two more children in the family.
Please help us!

Sergei, Maxim's dad
2011

We are announcing a new round of fundraising for Maxim's treatment!

Hello,
I am Maxim Rybakov's mom and I am asking for help. Maxim is now 18 years old. In 2011 he was diagnosed with severe type of aplastic anemia. The illness began suddenly with a sharp drop in all of Maxim's blood counts and development of a severe complication. A difficult and lengthy course of treatment was started, after which Maxim achieved remission. Unfortunately, it did not last long. The first relapse occurred in 2014, followed by several more. My son was able to achieve remission each time.
In 2018, Maxim graduated from 11th grade and enrolled into University of Railway Transport and Railways where he started studying Civil Engineering. He enjoyed his studies, but due to his illness it had to be paused. Another blood disorder, paroxysmal nocturnal hemoglobinuria, developed in addition to aplastic anemia. Currently, Maxim lives on ongoing blood component transfusions. He was prescribed Revolade, but this drug is very expensive: the cost of one package is 113 663 rubles, and it lasts only for one week. The course of treatment should last six months. We are doing everything we can to obtain this drug free from the government. But it will take some time - perhaps, too long. The treatment must begin immediately, however. Our family is unable to purchase the drug without the help of people who care.
Before the illness, Maxim was actively involved in sports, participated in judo competitions, and took first places in the district, city and all-Russia competitions. Now that he does not have the opportunity to practice his favorite sport, he is still interested in technology, loves to communicate with his peers, enjoys computers, and dreams of returning to school. We would like to ask everyone who cares to respond and help our son!

Respectfully,
Marina Rybakova
2019


 

Update as of November 29, 2011. Maxim is undergoing treatment for fungal infection with massive doses of Ampholip and Noxafil. Monthly therapy costs are approaching 1 million dollars. Unfortunately, the hospital does not have these medications in stock and our fund has to cover the full cost.
After pleural puncture, close to a liter of fluid was drained. It was sent to Mycology Institute for tests. A consultation with Prof. Klimko is scheduled for November 30th. Maxim is in a stable condition.

Update as of December 4, 2011. Thanks to therapy with Ampholip and Noxafil, fungal infection in Maxim's lungs was stabilized. The lesions are not growing, but are not getting smaller either. A surgery to remove affected parts of the lung is being considered. Maxim is in a stable condition.

Update as of January 8, 2012. Based on discussion of German doctors, surgery risks were considered excessive, and it was recommended to continue conservative therapy with liposomal amphotericin B (Ampholip) and Noxafil. Maxim returned to St. Petersburg and will be monitored at R. Gorbacheva Institute where he will receive IVs as a day patient. Monthly cycle of Ampholip and Noxafil costs 900,000 rubles. Help is still needed.

Update as of January 16, 2012. Maxim is still undergoing therapy as a day patient at Children's Hospital No.1. A quota for treatment at Gorbacheva Institute was not received yet. Maxim still needs full doses of Ampholip and Noxafil.
Maxim feels well. Further treatment for aplastic anemia and doses of Ampholip and Noxafil will be discussed after full examination at Gorbacheva Institute.

Update as of February 8, 2012. Maxim is continuing therapy for fungal infection as a day patient at Children's hospital No.1, while also consulting with specialists from Gorbacheva Institute. Maxim feels rather well, although his blood counts went down and he needed blood transfusions. He is improving in regards to zygomycosis. Based on CT scan results, the middle lung lobe began functioning and the lower lobe is scarring gradually. All the antifungal drugs are needed in the same doses.

Update as of March 30, 2012. Maxim feels well overall. His lungs situation is improving. Antifungal drug Ampholip was canceled due to signs of kidney toxicity. As soon as Maxim's condition allowed, he will start therapy with another similar drug, Cancidas. He will also soon start taking Cyclosporine to treat anemia.

Update as of April 11, 2012. Maxim continues to be treated in regards to primary diagnosis. There are visible improvements: his blood counts are stable, and no transfusions are required. Maxim still needs Noxafil to treat zygomycosis. His lung condition is improving, therefore the doctors have decided not to use Cancidas to treat the fungal infection for the time being. This medication is going to be used as a reserve to strengthen the effect of Noxafil, if needed.

Update as of May 15, 2012. Maxim feels quite well, he is taking Cyclosperin within his primary treatment. Maxim is also improving in regards to zygomycosis.

Update as of September 7, 2012. In August Maxim went to Germany for a consultation with German specialists. There were no new fungal lesions. Maxim was prescibed maintenance therapy. He is also continuing therapy for his primary diagnosis with immunsuppressive drugs Sandimmune Neoral.

Update as of October 27, 2012. Maxim is feeling ok. He is on home schooling. He continues the treatment course with losporinum (Sandimmun Neoral). Maxim's blood counts are gradually getting back to normal. In November Maxim is going to Germany again to see the doctors of the hematology center.

Update as of February 19, 2013. Maxim feels well, his usual cheeks blush and positive attitude are back. His blood count is slightly below the norm but blood transfusions are not required. Maxim continues to receive Cyclosporin. Tomorrow he is going to Germany with his father to undergo a full checkup.

Update as of January 18, 2019. Fortunately, Maxim was able to receive six packs of Revolade under free medication program. This should last him for two months of treatment. We are pausing fundraising for Revolade. If in the future, Maxim experiences issues with access to this medication, we may request help of our supporters again.

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design and styling - A.Ryahovsky | make-up and programming - E.Sourmava | finansial support - Yu.Klimova | translation - M.Fedotova, K.Filatova, Elena Alexandrova | copyright and administration - P.Greenberg