Lets Help Sam Roll Into The Future
Organized by: MichelleandLouis Maurina
EVENT DATE Sep 06, 2014
Samantha is 9 years old, loves getting her hair and nails done, swimming, and planting flowers with her Dad. She also loves singing karaoke, cooking, and playing with/harassing her big sister. She does great in school, has plenty of friends, and even knows how to sew on a sewing machine like grandma used to use! She insists she wants to be a teacher when she grows up.
But Sammie was diagnosed with Ullrichs Congenital Muscular Dystrophy, for which there is no treatment or cure. The past year has been extremely difficult for her. She started the school year still being able to walk with assistance, but by the end of the year, the disease had progressed so much that her father had to borrow a wheelchair in order to keep her mobile.
It's a long road ahead for her, and the doctors have told her father that Sam would now need a power chair to get around, and she will also need an EasyStand for the home so she can stand up and keep the blood flowing to her legs. In addition, she'll need physical therapy 3x a week to stretch out all of her muscles.
Samantha's father has been trying to provide for all of her medical needs on his own, and has been struggling trying to do so. He has spent the last three years family "vacations" at the National Institute of Health in Bethesda, MD with his two girls, putting Sammie through extensive testing, MRI's, and more. She has to endure even more testing twice yearly at St. Charles Hospital in Port Jefferson, NY at the Muscular Dystrophy clinic that they have there. She had serial casting done on her legs this past year, and needs to wear legs braces both day and night.
While no child should have to go through all this, Sam takes everything in stride, and always has a smile on her face. This new wheelchair would help her be able to stay active and enjoy her childhood. It is motorized and would grow with her into her teenage years. We anticipate the cost of all these needs to be in excess of 15k. Any help you can give is extremely appreciated. Let's help keep Sammie rolling!