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Denise Shuart

Fredonia, NY

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I am a single working mom of 3 children. My oldest son Anthony is handicap. He has cerebral palsy. Anthony is going to be 16 years old and as you can imagine has become very big and weighs 80 pounds. He does not walk or talk. He does not do anything on his own. He has to be cared for in all areas of daily living. He has a feeding tube because he can not eat. He also has seizures and multiple other diagnosis associated with the cerebral palsy. Right now my only means of transportation is my car. He can no longer sit in car seats because of his size. When I finally get him in the car I use pillows and blankets to keep him in a sitting position. He has a wheelchair that does fold but still does not fit in my trunk. Anthony has very high muscle tone which adds to the difficulty of lifting him in and out of the car. Even when his personal care nurse is there and we try to use a two person lift it doesnt work because there is not enough room in the doorway of the car for 2 people plus him. So only one person can try and get him in the car. I have been exploring all avenues for 2 years to obtain a wheelchair van. There is no funding for such a thing. Anthony has a medicaid service coordinator who has told me the only way is fundraising. I just started fundraising recently. It will be a long road. Anthony has many appointments in Buffalo and Jamestown. It is very stressful, I cry every night before appointments. It is not safe either for Anthony (the car ride) or myself (when lifting him). It is already challenging to take care of a child with special needs and even more challenging when you dont have the proper adaptive equipment to do so. I stand alone in the struggles of obtaining anything he needs. I want to keep my son home, in his home, and it is becoming more and more difficult to do so. Thank you for your time.