Jenavie Warrior Princess

Jenavie Aria Kamakanamailani

Jenavie is 4 months old and is born with a rare disease, that until now has not been studied.  What she suffers from is similar to Aicardi Syndrome which is a subset of Epilepsy.  Aicardi syndrome is a rare genetic malformation syndrome characterized by the partial or complete absence of a key structure in the brain called the corpus callosum, the presence of retinal abnormalities, and seizures in the form of infantile spasms.  In Jenavie's case, instead of retinal abnormalities, the issue is within the corneas.  She has been in the hospital 3 times since she was born due to her seizures problems.  More recently, Jenavie was diagnosed with a very rare genetic disorder stemming from the ANK3 gene.  
I am her Godmother and Aunt, hoping to raise money for her surgery she needs to fix the cloudiness in her eyes that is keeping her from seeing clearly. Her parents are my brother Gilbert and sister-in law Julie and they have 2 other children Giovanni and Gian. My sister-law was diagnosed with an auto immune disease this past year during her pregnancy and from the beginning, Jenavie was the miracle baby girl we have all been praying for. They do not know I am doing this, I just found out these needs last night. Julie has been trying to raise money by selling things online so that Jenavie can hope to have this surgery to see her family better.  Estimated cost of the hospital fee for surgery is about $1600.00.  The minimum needed by January 4th is $760.00 to have surgery in her right eye. Doctors will only do one at a time. All proceeds will go to Jenavies hospital costs. I know it's so close to holidays and I really don't like to ask for anything. Anyone that knows me, can vouch for that. I want to raise awareness to this rare anomaly that as a student nurse, I've only learned about as well. Merry Christmas and God Bless All.


Julie