Mariana :: arthrogryposis renal dysfunction cholestasis syndrome

Meet Mariana. Mariana was a precious little girl whose every moments will forever be treasured by her family. Mariana was diagnosed with ARC Syndrome (arthrogryposis-renal dysfunction-cholestasis syndrome) an extremely rare and fatal autosomal recessive multisystem disorder caused by mutations in the VPS33B or VIPAR gene. Mariana’s family knows this diagnosis all too well because two of her siblings had this same genetic disorder and passed away from it several years ago. There is no known treatment for ARC Syndrome. Mariana was kept comfortable by her amazing team of doctors and nurses at Valley Children’s.
Please join Sweet Nectar Society in sending Mariana’s loved ones continued prayers and words of comfort.

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Photography donated by Carrie Anne Miranda
Sara Jacobo

Hi my name is Sara and my Son Andres has arthrogryposis renal dysfunction cholestasis syndrome. I understand that your family has gone through a lot and I am so sorry for your loss..The Doctors we are currently working with has little or no information for us.. If you have information or names of Doctors that can help i would really appreciate it. Thank you so much