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Ana and Raúl

"On Sunday 22nd of April, we came back from spending a weekend at a friend's house in the countryside. Raúl, my 7-year-old son, had spent all weekend complaining about a stomach ache, and he was tired and pretty pale. On our way back home we decided to stop at the emergency room of the Niño Jesús Hospital, so they would see him, expecting they would tell us it was a strong gastroenteritis or something similar. When they took the first blood test, they saw that something wasn't right and that they would have to run some more tests and, therefore, he had to be admitted. At twelve at night, the doctors called us to tell us that it seemed there was a problem in his bone marrow, that it wasn't working correctly, and that on the next day they would do a bone marrow puncture to see what was going on.

Pacientes Ana y Raúl 4 hermanos

Raúl and Ana.

When they asked us if we had any questions, I asked them if it could be related to an analytic they had done to his sister, my other 5-year-old daughter, Ana, where they had seen she has very little platelets. The doctors told us quickly that we had to bring Ana's tests. On the next day, Raul's bone marrow puncture discarded leukaemia (as the doctors expected) and that same week they did a bone marrow puncture to Ana. They told us that the wait for the results would be long, and meanwhile, Raúl would have to remain admitted and isolated, at the Niño Jesús Hospital in Madrid.

Pacientes Ana y Raúl 1 jugando

On May 18th, they diagnosed our children, Ana and Raúl, 5 and 7 years old respectively, a rare disease, Fanconi's Anaemia, which is causing them bone marrow aplasia. That is, his bone marrow stops working. Right now, Raul has lower blood levels than his sister, and is waiting for a bone marrow transplant, and needs periodic blood transfusions, while he waits for a compatible bone marrow donor to appear.

When they gave us this news and we started talking to our family and friends we realized there is a great ignorance about bone marrow donation. People think it has to do with the spinal cord, and that they have to get an injection there, and a long etcetera of ignorance.

Pacientes Ana y Raúl 3 hermanos

In Raul's case, the search is even harder because his genes have a very rare combination which makes it hard to find a compatible bone marrow donor in the population. It isn't only our children; there are a lot of people waiting for a bone marrow transplant who, unfortunately, don't have a compatible bone marrow donor.

Pacientes Ana y Raúl 2 hermanos

Life can change drastically for anyone of us, without expecting it and without being prepared for it, but thanks to the help and solidarity of a lot of people, we can live day by day and keep having hope. The only thing we can do is share and support association who inform about bone marrow donation. Don't wait more, inform yourself and do it. Have solidarity and become a bone marrow donor. DONATE BONE MARROW, DONATE LIFE.

A big hug and thank you for your job and support,"

Nuria Úceda (Ana and Raúl mother)

Webpage updated 07/09/2019 16:37:26