Meet Andre Luiz
When I was pregnant, I was taking contraceptives. I have endometriose (a problem in the uterus) and for that it was more difficult to become pregnant. I went to the doctor and I was 3 weeks pregnant. I was already starting to miscarry. So I had to do bedrest because of this and at 3 months I already had started having contractions. I Took several medicines to control the contractions and more or less with 4 months I had to do a surgery (cerclagem of uterine lap) to close the opening of the uterus to hold the fetus in. Even so, it was very difficult and at 34 weeks the doctor had to do the childbirth.
When he was born, he didn't cry nor wanted to suck. He only moaned. After 24 hours he went to the ICU and was there 12 days, for breathing problems and gastrointestinal issues.
He had good days and everything seemed normal. Then at 3 months, the pediatrician said that the maternal milk didn't sustain and it prescribed cow milk. It was there that everything began. He didn't put on any weight. Since he was premature, the pediatrician said that we should be very careful with him and for that reason, maybe have special care for him, we didn't notice that he was "handicapped" but they said he had troubled vision, in other words, he didn't follow the objects; he had the movement with his eyes that was different from the other children. At 4 months I talked with the pediatrician that sent him to the neurologist. There began our drama. I changed of pediatrician and they discovered he was hypotonic. He began to do physical therapy till he was 6 months and exams and more exams. Until he was 8 months. He often had diarrhea and vomiting. He had to be hospitalized and it was 3 days interned. The doctor suspected he was intolerant to lactose and he prescribed soy milk. We thought that his problem was only that. We went to a great hospital in São Paulo and they began to do more exams and they discovered Andre's increased liver. The hepatologyst suspected of metabolic disease and he/she asked for some exams that would be sent to another State because where we lived they didn't do them.
The results arrived and nothing discovered. He made two skin biopsies.
The other neurologist asked for the panel peroxomal, that we paid at a private hospital and the exam went to the United States for analysis and gave alteration in C26 (6,19). The doctor had already suspected of Zellweger and with my researches in the internet was scared with the gravity of the disease.
The doctor said that he didn't have anything he could do but the good side was that Andre didn't have convulsions /seizures and he could sustain the neck. And that maybe more for front he had a more serious symptom of the disease.
I didn't give in to this diagnosis and I began to search in the internet, sending e-mails to all the acquaintances and through Orkut. It was through of those e-mails that Juliano had knowledge of my case and we began communicating. The coincidence is that the doctor that hetook care of his son is husband of one of the doctors that is taking care of my son.
He made the test of the cow milk but after 3 days he had diarrhea. He went back again to the soy milk but the doctor wants him to drink milk without lactose. The only problem is that that type of milk is expensive here in Brazil.
I work and he is at a school and the previous school didn't want to take care of him alleging that he would need more special care and that he needs a nurse. Since we didn't have the diagnosis. I got another school that is with him but he spends a lot of times at the doctors office or hospital. In January Andre got sick many times with breathing problems and we had to do several inhalations. At the moment he is well and he has been recovering his weight because it is very difficult for him to gain weight. He is very thin.
I consider him a happy child. He plays, laughs. He even holds some objects but he/she doesn't have enough force. He is everything for me. I do everything that is within my reach and I ask for God to give me forces to get past all of the difficulties.
