When, in a cold, impersonal room at a hospital, the doctor told us that Daniel, our son, our life, was very ill, the first thing his father and I thought was: Why him? Why me? Why us?
One always feels that if one is good, bad things will never happen. Otherwise… How unfair!
We were a happy family. We had a lovely, perfect child. Ours was an idyllic life, the life everyone wants and, maybe, the life you don’t appreciate enough when you have it. Without knowing how or why, this idyllic life suddenly collapsed like a sandcastle under the waves; the lovely child became ill, and walks on the beach, in the countryside or in the park were replaced by visits to the hospital, tests, injections, medication and never-ending hospital stays, confined between four walls and with only the view out the window to look at.
I remember perfectly how, every time the test results came back, I prayed: please, not cancer. Daniel was diagnosed severe combined immunodeficiency, what is commonly known as Bubble Boy syndrome. This is not cancer: Daniel’s cells were not malign. However, this did not mean that all was well with his cells. Daniel’s body was not capable of producing the key cells to defend itself from any external aggression, any of the diseases that surround us. Vaccinations didn’t work for him, because his cells were incapable of remembering and manufacturing antibodies. As if this were not enough, his cells, as well as not producing any defences, attacked each other, harming his organs, and causing him terrible joint pains. This made this three-year-old boy, who should have been running around and playing, spend all day in bed, without contact with other children, unable to leave the house.
This was a very hard time for us. The impotence we felt almost destroyed us. We, Daniel’s parents, felt his pain threefold. His tears were ours, as well as his frustration at not being able to do what he wanted, what all children his age do.
Soon after his diagnosis, the doctors concluded that Daniel’s only chance was to be sent to another hospital and to receive a bone marrow transplant. When all prospects seem so dire, you snatch at every chance. You don’t care that the transplant will take place in a town far away from home, or that it won’t be easy. You know that nothing is easy in these circumstances. We had further anxiety to face when, after taking the relevant tests, we were informed that neither parent was compatible with the boy, and that they had to look for an anonymous donor. Once again fate, had dealt us a bad hand, but this did not stop us.
As luck would have it, the Spanish Register of Bone Marrow Donors found an angel for us, a wonderful person who gave bone marrow -stem cells-, disinterestedly and without knowing for whom they would be used, not knowing that it was not just a child’s life that would be saved, but a whole family.
The transplant was long and complicated. We had to overcome many hurdles, sometimes by jumping over them, sometimes by breaking them and, on the best occasions, merely by avoiding them, by making a long detour.
Not long after the transplant, Daniel’s body violently rejected the bone marrow. At once, the doctors decided that the best thing to do was to repeat the transplant, but with another compatible donor, another anonymous person, another saviour.
After almost 3 years, two bone marrow transplants and unending hours in hospital, Daniel can now be vaccinated, knowing that his body will respond as it should. The best thing is that he is once again a normal boy, he can go to school, have friends and sleep in his bed, surrounded by his toys without listening to the beep of the medication pump, without feeling the agony of his disease. This is a dream come true.
We are not yet crying victory. Time has to pass to be sure that we have won the battle against the disease. However, we are happy with what we have.
Thanks to the doctors, the nurses and to unknown superheroes who gave their bone marrow, we have Daniel with us, and are a happy family. This is the most, the only important thing.
We don’t want anyone to have to go through what we have. This is why research on these diseases is essential.
Our country does not have the resources, or maybe the will, to contribute the necessary capital to undertake this research. It therefore depends on us, on you, on your interest and your will.
What if it were you? What if it were your child?