Site of parents of children with tyrosinemia
Living with Tyrosinemia

Mama Lena (born 2010): If I am asked, "Have you changed your life after diagnosis?". I answer: Yes, has changed. But do not tell that to the worst. It just changed. There is a story that will help you and do not despair:

Imagine that all life you dreamed to fly in a wonderful country. You've worked hard and put a lot of effort to earn money for a ticket. The ticket is needed only one way, since you are not going to come back.

And now the day has come, you sit down in the plane and together with other such dreamers go off. During the flight you imagine a new life, new friends, new hobbies. But suddenly, the pilot declares an emergency landing. You land in a completely different country that is not how it reminds you to your dreams. Your heart is broken, you are desperate.

But after a while you realize that things are not so bad. Let this not what you expected, but it's not the end. In this country, too, live wonderful people, and the flowers bloom. Let not such beautiful as the country of your dreams, but they are. And you realize that you can live and be happy.

For this, do not despair. Life goes on !!!


Mom Tolley (2011 DOB): live with tyrosinemia it was not as bad as it seemed at the beginning. Son brought up as an ordinary child. He knows that some of the products he can not eat, especially meat.

In 3 years I went to kindergarten, where he had a separate menu. Today, he looks older than his age, others do not believe it - a vegetarian. Intellectually and emotionally he was even a little ahead on the development of their peers. He prefers to play and communicate with children older than themselves.

Since we live in a small town far from the central Russia, there are certain difficulties in not readily accessible protein-free food, as well as its high cost. In our region, there are no specialized shops. In this regard, in big cities easier. At least once a week try to eat as a family as a vegetarian.

In 2014, our family had a second child, which, fortunately, is healthy.


Mama Nadi (2011 born):Up to one and a half months, our little girl has grown and developed, like all normal children. But once she had a high fever, and we urgently taken to hospital with suspected pneumonia. On admission, the child took the blood - it turned out that all the indicators are very low, some almost to zero. There were swelling throughout the body, increased the volume of the stomach, there was shortness of breath, decreased temperature, ascites started. Diagnosis Tyrosinemia put us in Moscow and in a couple of months, the child began to make essential medicines, and then the first week of the condition has improved markedly, all analyzes were normalized, and we safely discharged home.

At first it was hard to imagine how the rest of our lives in the future: the diet, providing life-saving medication, social adaptation (kindergarten, school) and more .... But after a few months, everything returned to normal by itself. Nadya does not differ from their peers, enjoy visiting the kindergarten. He understands that it feeds not all, and not asking "forbidden foods".