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Helping Ben & Em through disability

Organized by: JAMES SMITH

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Friends, I'm here humbled and humiliated and frightened, and I need help-perhaps the three hardest words for me to say. Emma and I find ourselves on the cusp of homelessness. As you may know, beginning in October, Emma's health began to decline. I lost my job, largely because I missed work to care for her. In January, Emma started a series of hospitalizations which continue to this day. Basically, every other week she's been in Mass General Hospital with recurring drug-resistant pneumonias. She'll start treatment with one medicine, and seven to ten days later a bug resistant to the meds she's on moves in,and we start the cycle again. In April, Emma got a new diagnosis: Plastic Bronchitis. Her lungs make thick plugs that block her lungs and rob her of oxygen. When she coughs them up, they plug her throat and trach and cause an emergency. Last month she spent several days in the intensive care unit after one of these episodes. Up to 30% of people with this disease die from it. Emma can't speak, and these episodes occur any time of the day. I have had to be with Emma at the hospital every moment. When she's not inpatient, she has many outpatient appointments every week. So I can't work. Anyone who knows me knows that I am not lazy. I'd love nothing more than to go to an office every day and have a healthy child. I can't now, and I don't know when I will be able to again. And today, I find my landlord has been evicting me. I didn't know, because the address on the forms is not where I live. I just came from court, and the judge didn't care. Basically, his answer was "too bad." We've applied for many benefits. I am continuing to do so. So far, we receive none. If I were disabled, we'd be ok. If Emma was an adult, we'd be ok. There is very little help for parents of disabled people. The hospitalizations have cost me thousands in parking and meals alone, and my small resources are exhausted. Ultimately, I'll need to move very soon. I'll need to prepay some rent. And I can't. I have virtually no income. And I am out of options. Any help you can provide would be so gratefully received. I hate myself for even asking. I feel like the deadbeat who can't provide for his daughter, and it is killing me. I'll work for it, if you have work I can do. Sharing this with your social networks will help too. Thank you. Thank you. Thank you. For some of Emma's history.


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