Season`s Greetings!

It has been a quiet Christmas. We are preparing the last details for our trip to Hadassah Hospital. All our hopes are with them right now.

Happy Holidays to you all!

We have teeth, hurray!

Tuesday was transfusion day. It is getting harder and harder to keep Bibi still during the transfusion.The veins on his hands and feet are no good and we had to place the transfusion line on his head. It was heartbreaking to see him screaming with pain and looking at me with his big eyes that said:"mommy, why do you let them do this to me?". He calmed down when I held him and we stood like this for an hour and a half.

We came home in the afternoon and to my surprise, while cleaning his mouth, I found a bit of tooth coming out of a sore red gum. It is white and very, very sharp! Hurray for Bibi!

Bibi`s story

Bibi`s name is actually Tudor-Daniel, but this is the name we call him by. He`s just turned six months and is a happy baby. Because he has parents and grandparents who looove him.

For more than four months now, we - as parents -, are fighting the uncertainty of medical science, as our son was diagnosed with a terrifying disease: Aplastic anemia, in evaluation for Diamond-Blackfan syndrome, shortly DBA.

What is DBA?

The Diamond-Blackfan syndrome is a type of anemia of which they do not know the cause. It is a very rare disease ( at the moment, there are approx.600 recorded cases worldwide). It manifests as the inability of the bone marrow to produce hemoglobine (the red cells of the blood).

How does Bibi react to the prescribed treatment?

In most DBA cases they apply corticosteroid therapy, which, in theory, keeps it under control. The only known curable alternative is bone marrow transplant from a compatible donor . Bibi has been on Prednisone- the most common corticosteroid- for more than three months now and unfortunately there are no results. The only thing keeping him alive are the monthly blood transfusions that, on the other hand, overload his body with iron.

Our plans for the future

At the moment we are planning a trip to Haddasah hospital in Jerusalem, Israel for a second medical opinion and more investigations ( a new bone marrow biopsy, extensive hematological tests, genetic tests and HLA matching).We are really hoping for improvement of his condition.

The aim of this blog is to keep a public record of his evolution and make his life known to all who want to read about our experience through life. I know that my son wants a happy healthy life and we will do everything in our power to achieve this.

I am posting links to his clinical history so far and the results of his first bone marrow biopsy.

De la living with DBA

De la living with DBA