Help Paul keep his freedom

My name is Paul and I am about to lose my freedom and quality of life as I know it. I was born with SMA type 1 and given 3 years to live. I've been lucky enough to make it to 37 with the help of family and friends. I currently have my own place and am able to enjoy most of the freedom that comes with that. The difficult part has always been finding nurses that can help me with the basic functions of life. I need help coughing, eating, going to the bathroom, and being turned when I sleep to name a few. What's difficult about this is the nurses that I can use with my state assistance are only paid around 11 dollars an hour and no medical insurance. This is not a suitable wage for what caring for me requires and therefore most nurses quit shortly after starting. Back in 2015 I was lucky enough to get married to someone I thought I was going to spend the rest of my life with. We had 2 years with each other and she ended up being the reason I was still cared for, despite not being able to find any nurses. Late last year my wife left me and everything has gotten much more difficult for me since then. My mom (who is 65) is currently my only PCA and has been caring for me 24/7 with no relief or chance to even get good sleep. It is taking a toll on her and it's come to the point that my only option would be to go into a nursing home or group home. Not only would I lose my freedom and quality of life but with my disease and low immune system the chances of me getting sick in a facility are incredibly high. I decided to call a couple of professional private nursing companys to see what the costs of caring for me for a year would be. I've been given a rough estimate of $28,800 which would cover 5 days a week, 12 hours a day. My mother would still have to help care for me but it would be much more possible with her getting sleep and time off. This is my last option and I just don't know what else to do to try and enjoy whatever time I have left.


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Organizer and beneficiary

Paul Suter 
Eagan, MN
Jill Suter 
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