“My name is Noah Daniels, I’m 27 years old and I have a form of muscular dystrophy called scapuloperoneal myopathy. It is a rare mutation of the neuromuscular disease that affects its carriers later in life. It wasn’t until I had just turned 21 years old that I was officially diagnosed, and up until that point I had spent my entire life with full, uninhibited, ambulatory mobility. Over the last 6 years, the disease has completely stripped me of the ability to walk or even stand, and I have extremely compromised mobility in my upper extremities as well. I get around with the assistance of a power wheelchair, a hoyer lift and countless hours of home healthcare. I was granted a very limited allotment of these hours to hire outsourced helpers, but the brunt of the work has fallen upon my own family members. Up until 2 months ago, my father, Benjamin Daniels, was my full-time caregiver for the past year. Unfortunately, my father has been dealing with some health issues of his own and was hospitalized at the beginning of the summer for respiratory issues and double pneumonia. He has since declined further and is now resuming in hospice care. Because of my father‘s absence, I have spent the last three weeks confined to a hospital bed at the facility of Broward Health North. The hours of home healthcare that I retained were not enough to cover the care that I require, so I had no choice but to admit myself to a hospital where I could receive care while I attempt to obtain admittance to a skilled nursing facility where I can receive care on a long-term basis.

I have since found a facility and I am starting the process of being admitted, however at least the first month’s fees will have to be paid privately and independently outside of any insurance coverage. I have been on disability and Medicaid for well over five years now, but I do not receive any sort of financial compensation because I have maintained employment for the past four years. Because I work and am subject to Florida’s income restrictions for those on disability, I was told that I make too much to receive any additional financial assistance. The money I make from my own income is well over four times as much as I ever received from disability benefits, however it’s still not nearly enough to cover my cost of living. In order to gain access to care at this facility I have to tender my resignation at my job and revert to receiving the inferior Social Security payments, as the center deems my personal income too unreliable and inconsistent to be counted on for billing. However, those benefits won’t go into effect for at least another month. I have hardly worked at all this month, but I have already logged my wages for the month of June, therefore I won’t receive any financial bestowment until September at the earliest. My room and board for the first month in the facility will be close to $10,000, and that is before the cost of healthcare is even factored into the mix. It is crucial that I am discharged from the hospital and admitted to the facility as soon as possible because my father will be taken off of life-support imminently and unless I am released from the hospital I will be unable to say goodbye to him before he is gone. If you are able to contribute in any way, whether it be financially or through sharing my GoFundMe, it would be greatly appreciated. Thank you, Noah.”