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Turning Fear Into Hope

This is a story that cannot leave one indifferent. This is a story told by a mother:

“My Tanya is aged 10. Her laughter takes my breath away; her achievements make me feel proud, her sadness makes me upset, her sorrows hurt me. In a word, Tanya is a nice and happy child — just as other millions children are; and I am her mother and my Tanya is the best and the only one for me. If you are a parent, you know what I mean…

In a whirl of many–colored feelings I have for my daughter, there is one that is always in the depth of my heart — I would call it anxiety. I feel it all the time no matter what she does — I just know that things do not go right inside of her fragile body that is protein intolerant.

Tanya suffers from phenylketonuria also known as Flling's disease. It means that she can eat neither animal nor vegetable protein. She cannot eat anything that contains phenylalanine. The disease cannot be cured, but can be “tamed” in a way — Tanya is allowed to eat only vegetables or fruit. Those can be eaten also in limited quantities.

I am not going to tell you how hard it is to keep to the diet for Tanya. Again, if you are a parent, you can easily imagine how you would have a nice Friday night dinner with your family. You probably would be more than happy to serve something tasty and special for your child during this meal. And you would probably be more than amused to see how piles of ice–cream disappear in the little mouth of your off–spring for dessert.

But I never experience this amusement… Tanya has to be very particular in food items she can have. She has to constantly and strictly control her food preferences even though she is just a ten–year–old girl. As you understand, fruit and vegetables cannot provide Tanya's body with all the vital microelements she needs to lead normal life. So, I have to give her high–protein food supplements to compensate for natural amino acids absence. These food supplements must be phenylalanine free. Unfortunately, the only medicine of this kind available in Belarus has serious side effects — nausea, allergic reactions, running temperature, excessive phenylalanine level in blood, etc. that damaged Tanya's health. So, in 2004, I decided to quit giving my child this medicine and keep to the diet only until I find an alternative food supplement that will really help my Tanya.

I found out that the “Phenyl–Free” medication produced by MeadJohnson (USA) will help my daughter. But when I discovered what the price for this food supplement in Belarus is, I was shocked. I am a single–mother and I can only afford basic things, and “Phenyl–Free” was not affordable at all.

The time was passing by and my anxiety turned into fear as I knew that once people suffering from this disease do not take special medications for a long time , phenylketonuria affect their brain cells. This damage causes convulsions, hyperactivity, self–traumatic behavior and other mental disorders that may be life incompatible.

So I turned to the Jewish community of Minsk. And the answer came from there. They said that some people in the States would donate their own money to buy six cans of this food supplement for my daughter. And my fear turned into hope.

Tanya is taking the food supplement again and I — just as any millions mothers on earth — believe that my child will have a great life. Apart from that, now I know that a strong shoulder of the community is right there for me when I am weak and despondent. I would like to express my gratitude to each and every person who made this donation. Indeed, you gave one more chance for health improvement to my ten–year–old Tanya.”

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