Yasaman Yazdanpour Case History

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Yasaman Yazdanpour was born on 18th August, 2009 after a normal pregnancy and delivery. She weighed 3.5 kg. She refused breastfeeding. The doctor told us that this could be due to the fact that she had little strength in her jaws and so she becomes tired easily; so we had to help her with bottle-feeding. The doctor told us that this was abnormal, and changed her milk formula. One month after they changed her milk formula we found some abnormality in her vision. Finally when Yasaman was 6 months old she was diagnosed as having a Generalized Peroxisomal Disorder. After that while we were looking for more information about Peroxisomal Disorders on the internet we read about Dra. Martinez’s studies. We copied Yasaman’s medical notes and sent them to Dra. Martinez. We got an immediate response. We read some research papers from medical journals on her study. We were really impressed, so we arranged for a blood sample to be sent to Barcelona. Dra Martinez confirmed her Peroxisomal Disorder and the DHA levels tested as being significantly low. Then we went to Barcelona to visit Dra Martinez. When we went to Barcelona Yasaman was 11 months old and her weight was 7.5 kg. It was during our stay in Barcelona, no more than five weeks after starting the DHA therapy, we noticed the first sign that the DHA was helping. Her weight increased to 9.5 kg and we saw an improvement in her muscle tone, a decrease in her liver enzymes, better weight bearing on her legs and just an improvement in general. At last we felt like there was hope; a way to do something positive for our girl. And as well, we had found a doctor who had a deep understanding and great knowledge of such a rare condition. It was a great comfort to us. We are so grateful to Dr. Martinez for her dedication and hard work in continuing the study. She has provided a way forward for Yasaman and children like her when nothing else was available. Unfortunately Dr. Martinez passed away last year and we were so worried about continuing Yasaman’s treatment. I also appreciate your help and support regarding the DHA capsules which is now really essential for our children.

Monireh Tehrani

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Initial liver enzyme tests

Later liver enzyme tests

Initial VLCFA ratios

Second VLCFA ratios

Third VLCFA ratios

Fourth VLCFA ratios

MRI report

 

  YasiYasi5

Yasi's family