*EDIT*: As of 6/26/18, our daughter Sabrina has passed away at the age of 24. She will be missed terribly. Batten Disease is a very rare, fatal disease of the nervous system that currently has no cure. Sabrina was diagnosed at the young age of 7, gradually losing her vision first and battling seizures.
Sabrina lead as normal a life as possible, partaking in camps for special needs children, going on vacations, and especially attending the Illinois School for the Visually Impaired, where she was prom queen, a cheerleader, an athlete, had holiday and birthday parties, played games, and lived amongst peers and teachers that made her life special.
As Sabrina got older, her condition declined and she became immobile, losing functions that we take for granted everyday. Sabrina did not lose her spirit though. That lasted until the very end.
Sabrina loved The Titanic and movies more than anything. It brought her constant joy. The second she'd hear the first couple bars of My Heart Will Go On, she'd yell "I love this song!" She loved music, and her taste ranged from heavy metal, to pop, to country. She loved Britney Spears, Black Sabbath, Justin Timberlake, The Dixie Chicks and The Backstreet Boys the most. She loved playing with her bop it, eating food, halloween, Christmas, scary movies, popcorn and singing.
Sabrina is survived my her mother Jennifer, her father Domenic, her sisters Amanda and Sam, her little brother Dom, who she cutely referred to as "the boy," and her numerous amount of family members who loved her.
It is a great time of need for my family. Any small amount will help us through this.
For more info on Batten, please visit https://bdsra.org.
My daughter Sabrina was moved to hospice on June 25, 2018 due to her battle with Batten Disease. We are struggling to make ends meet as this has put quite a strain on us financially.
We are asking our friends and family and anyone who can to please help us raise money to assist with bills, rent, transportation fare, food, etc., for the month. It's very hard for me to do this but any little bit helps.
Thank for from the bottom of my heart for reading and considering this.