These are just some of the words that family, friends, and educators use to describe Samantha Garcia (Sammie).
Samantha is a 7-year old child who has been diagnosed with Cerebral Dysgenesis, Neuropathy, Ichthyosis, and Palmoplantar Keratoderma Syndrome (CEDNIK Syndrome).
Samantha is only the 8th child in the world to be diagnosed with this rare syndrome. She is legally blind, has significant hearing loss, is limited to what she can eat by mouth, and gets most of her nutrition by a tube inserted directly into her stomach (G Tube). She is not able to walk on her own and has only a few words. Sammie is 100% dependent on her parents for ALL of her needs and caregiving.
Samantha is so much more than a child with a disability ~ she is a daughter, sister, granddaughter, and extraordinary student. She can melt the coldest heart with her beautiful smile and happy giggles. Her personality leaves a mark that is truly unforgettable. She is beautiful inside and out!
Like all children, Samantha is quickly growing more and more each and every day. She is now almost 5 ft tall and weighs just over 50 lbs. I am only 5'1". It has come to the point that my husband and I are struggling to pick her up to move her. Our bodies are also aging and we are beginning to suffer from repeated injuries sustained in our roles as caregivers. As a parent, especially of a special needs child, this is incredibly hard to accept!
It is difficult and humbling to ask for help, as I'm sure many of you have felt the same way. We have held off on this for as long as possible but have come to realize that this would be in the best interest of Sammie and so we ask. My husband and I would like to purchase a van with a wheelchair lift on it. This would help Samantha in so many ways. It would ultimately result in less stress on her body, as well as ours, and would assist Sammie in being able to get to school, doctor's appointments, or anywhere else she needs to go. We have been seeking help from other organizations for quite some time now, but have not been guaranteed anything. Any donation, even a small one, would be greatly appreciated and would help us reach the goal of being able to keep Sammie moving forward on the Road of Life. Please take the time to watch the video above and get to know Samantha like we do. Whether you are able to donate or not, we grateful for your consideration, your time, and willingness to share this! From the bottom of our hearts and on behalf of Samantha and our family...