Tamara Aksyonova

16 years old, lives in Rostov region .
Diagnosis: Juvenile rheumatoid arthritis.
How you can help: On October 27, 2012, Tamara was hospitalized in the regional hospital of Rostov, where she was supposed to receive treatment with prescription medication Enbrel that she’s been in desperate need of. Within the next 2 weeks it shall be clear if she will receive her next dose of Enbrel to continue her treatment. Tamara’s mother addressed Rostov’s regional chapter of Russian Ministry of Health with a complaint about the actions of their local hospital. We hope that the issue of supplying Tamara with her medication will be resolved without her mother having to appeal to higher authorities. If within the next 2 weeks Tamara doesn’t receive the next dose of her medication, we shall continue raising funds for her.

Story

Tamara's  story

Tamara is sixteen years old. This gorgeous girl with long chestnut hair is in the eleventh grade (a high school senior) and is getting ready to receive a gold medal (Russian award for straight-A high school graduates) next summer! You could never tell by Tamara’s looks that she’s been sick since childhood. This makes it harder to accept the harsh reality of this girl’s life…

Tamara became ill when she was six. She started receiving treatment with many different types of medications, including antibiotics, at a hospital in Rostov-on-Don (the regional center). This harsh treatment caused a severe stunt in Tamara’s growth. She began having problems with her endocrine system. Since the treatment at a regional hospital didn’t prove to be effective, Tamara was sent to the immunology department of the Russian Children’s Clinical Hospital in Moscow.

Since 2006, Tamara has been under constant supervision of the Russian Children’s Clinical Hospital. As her mom says, “Only God knows how much my girl had to go through during all this time”. Doctors have tried multiple approaches in Tamara’s treatment throughout this time.

Despite all of her health complications, Tamara manages to accomplish seemingly impossible things. Since the first grade and until now, she had to be homeschooled because her frequent hospitalizations prevented her from attending regular school. Every 2 weeks she had to go to Moscow to get an intravenous injection of her medication. The round trip by train took 36 hours, and she had to do it every 2 weeks… That doesn’t leave much time to study hard at school, you might say. But regardless of that, Tamara remained a straight-A student! She is currently aspiring to obtain a gold medal for her studies, and in summer she is planning to apply to a medical college. Tamara loves to read and studies a lot of additional material to get prepared for the Unified National Examination (Russian equivalent of SAT) at the end of the school year. Recently Tamara received an e-reader as a gift from UniCredit Bank. In her thank-you letter she wrote that the gift was great not only “because of my love for reading, but also because it helps shorten those awfully long days at the hospital. Recently I appreciated the necessity of this wonderful thing even more because I’m getting ready to take my exams, so the book helps me so much in my preparations!”

Tamara’s biggest dream is to become a geneticist or an immunologist so that she may invent a treatment to cure rheumatoid arthritis!

This year, Tamara was prescribed Enbrel. She is supposed to receive it on a continual basis. This drug is expensive, so Tamara’s family can’t afford to buy it every month because they are already buying her two other vitally important and expensive drugs. There’s no money left in their budget for Enbrel. There are very few job opportunities in their small coal-mining town, and, because of their frequent trips to Moscow for Tamara’s treatment, the girl’s mother is afraid to lose her job. She works as a nurse and tries very hard to make sure her daughter has all her necessary medication, but the price of Enbrel is just too high. And of course, our young beauty has her dreams of a beautiful prom dress towards the end of the school year… But how can she dream of a dress if it’s hard for her family to afford even the vitally needed medication for her?

We want to help this wonderful girl very much. She’s truly brilliant and beautiful. She’s fighting so hard for her future and for her life. She’s the kind of person who always finds strength to go forward and better herself despite her illness. We truly believe that in the future Tamara will find a cure for her disease. It’s up to us to give her that future.