Elliana was born August 2nd 2019 shortly after she was born the doctros had told me someithing was wrong with her but not sure exactly was wrong with her they said she had low musctle tone and she didnt have very good suction. As she was in the nicu for 2 weeks we had done a genetic testing where we found out that she has a rare disease called sptan1. There is less then 100 people in the whole world with this disease so its a learnig experiment for everyone. This genectic causes epilepsy, mental retardation and even death. Elliana is on the severe end of the spectrum we just found out that her brain is deteroating she has tonic seizures, blind, can't talk, walk, roll, crawl, she pretty much sleeps 90% of the day. She goes to physical, occupational, developmental, aquatic, speech, eye therapy. Her doctor in chicago says just give her the best quality of life so thats all were trying to do at this time. All proceeds will go to help with gas to and from therapies and appointments as well as bills and other thing when the time comes.
I made this because I have had several people ask me if I had one.
