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Wa are Daniel Bravo and Maider  Zubicaray. A young couple from Pamplona who have decided to expand the family. We're having a baby what illusion ... but at 27 weeks of gestation something was not quite right, started some small contractions forced to rest if we did not want Maialen was premature. Finally at 40 weeks of gestation Maialen decided it was time to know this world. It was a normal delivery, even fast for first-and at 7 am we welcomed our greatest gift. There she was, with a thin cry, Maider melee. The doctors told us that everything had gone well, we had a very healthy baby and from that moment our fears disappeared, it was time to enjoy, to see him grow and make future plans for the imaginary time but someday be fulfilled ...


Maialen born in Pamplona on July 17, 2009 at 7:00 am. It came at 3 kilos but he looked a girl full of life. It was a very quiet girl and sleepy. That summer was very hot so our trips were in the afternoon, when the sun began to fall. Soon began to smile, let himself give kisses all the world and was a spread, only if she slept well filled tummy. One day began issuing a small noise and suddenly his first "anjo" how wonderful to hear his voice but soon stopped making these noises so funny. We offered rattles and dolls but did not look or trying to touch them, not sitting held, not clinging feet ... something seemed to go well but one prefers to think that is slower than other children, each child has his pace but in the review of the six months of the first alarm jumped pediatrician. He decided to come back the next month and that day, at 7 months old, we were told that it seemed quiet but Maialen neuronal might have a problem. It was an incredible cold water. With our 7 month old had to go to the neurologist, our future plans gradually faded, our life was going to take a 180 degree turn, a turn that we did not want to give but we could not do anything to change things. The doctor decided to do a blood test and the results were disastrous for what could tilt a metabolic disease but we still had the opinion of a neurologist. In April 2010 we entered Maialen first. It was a long week. Blood tests were going wrong and MRI was not good. According to the doctor could be a cerebral atrophy or hydrocephalus. Another cold shower. You start to fall apart without realizing it. We conducted a genetic study consisted of three parts. The first two were quickly told that normal but we were missing a part. It took a few months of a tense calm, full of uncertainty and fear, hard times. In September we learned that the left was the Rett Syndrome Those days were endless, we looked online to see what was the disease, because at that point we had not named, wondering what will become of our daughter, becoming mad. .. and ten days later they called to give us the result we were expecting much. We discarded this terrible disease and we breathe calm and try to forget the word Rett. We page but now what? We returned to the doctor in November 2010 and while we waited in the waiting room stood Maialen way, blocked so the doctor sent us to the emergency room to do tests. Returned to admit you a week. They repeated all the tests that had been done a few months ago but this time everything was normal. Now that we were lost ... Our neurologist said that genetics was normal but still leaning Rett Syndrome. We decided that this could not continue and we went to Barcelona to San Juan de Dios hospital with Dr. Pineda. That was the greatest pitchers of cold water that we receive because he saw her he said "this is a Rett". We could not believe what we were hearing, we were thinking that we could confirm but the moment you say it is so hard that no words can explain. The doctor was very clear and direct but we felt that finally someone had told us things as they are, with your name. Followed tremendously tough few weeks until we decided it was time to stop mourn, to lift his head and fight for what we love most in this world, Maialen