My name is Tiffany Resendiz and I am a care provider for my little Sister Victoria Trueblood. My sister Victoria is 18 years old and was diagnosed with Rett Syndrome when she was about 5 years old. Her Syndrome keeps her from walking and talking, the things you and I might take for granted. She is mentally about the age of a 6 year old and acts like a little baby would.
I have been caring for my sister for about 4 years now and I couldn't picture myself doing anything else. My sister is such a joy to send time with. My sister is currently on a number of medications. She takes 2 medications for her seizures, 1 for her back pain due to a Harrington rod, 1 for her indigestion problems and the list continues on and on. As of currently, she has 420 hours for care providing for her, without which I don't know what my mom would do.
Taking care of Victoria is a 24 hour job, she even needs to be listened to through the course of the night due to many Rett Syndrome girls passing away in their sleep. The job which entails taking care of Victoria is not a easy job at all but I wouldn't see myself doing anything else. The thought of not having the hours available for taking care of Victoria is a idea that my mind would never want to grasp. I am not in one bit afraid of losing the hours for self pity but the thought of Victoria not having hours to receive proper care for bath time and nightly activities scares me to death.
On the topic of health care such as dentist appointments, eye doctor appointments and prescriptions being cut could be severe and even deadly to a person with special needs like my sister. Without her medications my sister couldn't survive even a day and the thought of living without my sister is the worst thing imaginable. Without eye glasses adults and even children have no way of seeing and for some disabled people seeing is everything to them when they cant walk or talk. Seeing is all they have. Not being able to go the dentist is just as horrible because these are the only teeth they are going to have and if this privilege is taken away how will their teeth be properly cared for?? Could you imagine haveing no money or means to pay for the basic things like a simple teeth cleaning or fluoride treatment.
I'm sure many non-disabled people couldn't imagine what this would be like because they have proper medical care, but for me with hands on experience it could be vital for the survival of someone like my little sister. I love my sister very much and the thought of her turning 18 didn't scare me so much until I saw the cuts that were being made and the decisions that were underway.
I am asking you to think about the many disabled adults who are affected and ask yourself, If I was disabled, would I want for myself what I am cutting from so many other disabled people?? Put yourself In my shoes for a day, taking care of a helpless person that has no means but to be in the graces of others and I bet you will find your answer changes. Please, for the sake of a little girl that is disabled and many others who cant speak for themselves, reconsider your decision. If my little sister cant speak then I alone will be her voice.
Tiffany Resendiz
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