Cheers to Charlotte Rose!
Meet Charlotte Rose (aka Charlie Rose):
Charlotte has been a fighter and the light of our lives from the start. She is a happy and loving girl that was born prematurely at 35 weeks. At 12 days old, we began treatment for a clubfoot that she was born with. This treatment led us on a much larger journey than we ever anticipated. In this time, we began seeing multiple specialists to find out what could be causing some of the orthopedic problems, as well as other developmental problems, that we were beginning to see. In November 2013, Charlotte was diagnosed with a rare genetic condition called Infantile Free Sialic Acid Storage Disease. It is a degenerative disease that affects her entire body. Skeletal abnormalities, enlarged organs, seizures, developmental delays, impaired vision and severe respiratory infections are some of the symptoms associated with the disease. Only a small number of people in the world are documented to have this form of the disease, and unfortunately, at this time, there is no treatment or cure. When we were diagnosed, the doctor told us that she only had weeks to months to live. Charlotte just had her third birthday!
Over the past three years, she has undergone multiple surgeries for her hips, g-tube placement, ear tube placement and tonsils and adenoids. Frequently, she is in the hospital for pneumonia, rhinovirus, enterovirus and psudamonas. Despite all of this, she continues smiling and fighting through to heal and get stronger. We have a wonderful team of people that work with us to help keep her well and happy. We are so fortunate to have found these doctors, nurses, therapists and teachers that bring new knowledge and experiences to her daily life. Not to mention all of the love and support from our family and friends.
In her short life, she has done so many amazing things. Charlotte has therapies 5-6 days a week in addition to the work that we do with her at home. She has physical therapy, occupational therapy, speech and a teacher that comes to the house. Some of her favorite things to do are listen to stories, sing songs, walk in the stroller, swing on the swings, and be outside to do just about anything. She loves the individual attention but if there is an audience, even better! Charlotte continues to make progress towards her goals, albeit slow. She is a hard worker and touches the hearts of all that work with her. Her strong spirit and determination are an inspiration to everyone that knows her! We are so very proud of our little girl!
This fundraiser would allow for us to purchase equipment that would aide in her therapies and her overall quality of life. It would also help us in paying for the mounting medical expenses that come with the level of care that she is receiving. Please consider supporting our family and say, “Cheers to Charlotte!”
City & State: Redondo Beach, California
Fundraiser Leader: Ann Bybee
Fundraiser Type: Medical Causes