I have a 5 year old daughter who has not been diagnosed yet, and according to the magnetic resonance imaging, holoprosencephaly has been discarded, but all her phenotype matches exactly this disease and I don`t really know what to do. We are a family from Uruguay a very small southamerican country with no economical resources who depend on the system of Public Health and they do not give us any answers , the only thing that has been detected is a cyst on the pineal gland (I`m not sure if this is the correct name of this gland in English),and all the abnormalities in her face (a flattened nose with only one nostril,short filtrum, single uppermiddle tooth,close set eyes ), a short stature , deep palate cavity , she has had to face severe problems with feeding etc.
I would be really grateful if you could answer and give me certain guidelines and help
Mirna Espino email@example.com
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