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Aleksandra Tarchokova

Russia

My Story

Aleksandra is so smart and she has great sense of humor. She dreams to be a cook and loves to watch cooking shows. Also, she loves everything about space and the first astronaut Uriy Gagarin. She loves to dance and sing, especially when she has to go to sleep.

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HOW OLD WAS YOUR CHILD WHEN THEY WERE DIAGNOSED WITH SIOD?:

5

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WHAT WERE YOUR THOUGHTS WHEN YOU FIRST LEARNED THAT YOUR CHILD WAS DIAGNOSED WITH SIOD?:

It was obvious that smth is wrong with Aleksandra. I guess I felt relief because I got some clearness about my daughter.

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TELL US BRIEFLY ABOUT THE MEDICAL COMPLICATIONS THAT HAVE OCCURED BECAUSE OF SIOD:

chronic renal failure of the fifth degree, growth retardation, high blood pressure, problems with food digestibility (gluten, lactose), frequent infectious diseases, paresthesias

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WHAT HAS YOUR CHILD'S TREATMENT PLAN LOOKED LIKE?

automated peritoneal dialysis
drugs that lower blood pressure
vitamins, amino acids and trace elements
special diet
homeopathy
regular visits to an osteopath

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WHAT CHALLENGES DOES YOUR FAMILY FACE BECAUSE OF SIOD?

I don't know how to answer this question, because we have to change all our life because of it. Every step became difficult, we always have to adjust everything to Alexandra. The most difficult thing is that nobody really know about SIOD and how to help. It feels like wakling with the closed eyes.

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WHAT WOULD A CURE MEAN TO YOU AND YOUR CHILD?:

Life. It would mean life.

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