Hi my name is Nikki and I currently live with Cystic Fibrosis. I decided to write this petition because I need your help to fight for our well being. I was born with CF. There has never been a day where I was not sick.  

I had few opportunities to work in high school because trying to balance high school and a terminal illness was hard enough. I was in and out of the hospital for 2 weeks at a time, 3-4 times a year. I was forced to get my GED. But that's not the problem here. Being that I never worked, I never earned credits towards Social Security Disability. I never had the opportunity to. And I still don't. So when I hit 18 and my mom's income no longer counted for me, I was stuck getting a minimal Supplemental Security Income check monthly (which is for people of "low income") of $650.

If you haven't worked a certain amount of years, then you do not qualify for disability checks. And we all know that $650 barely enough to pay for 2 utility bills. Especially here in TN. I have tried to work. When I do, they cut my SSI. Then when I'm in the hospital and can't work I'm stuck living without income until the SSI office can catch up with it. Which takes 2-3 months. I can't keep a job long enough to earn SSDI credits. So I'm stuck.

Like many, I will forever be stuck. A majority of Cystic Fibrosis patients were diagnosed at birth. So they are in the same sinking ship that I am. Unlike most typical disability cases, we didn't work 20 years then go out on disability for a hurt back. We were always sick and always will be. But the last time I checked, we are in fact DISABLED but apparently that's not enough to earn a disability income. And SSI is simply not enough to sustain ourselves. It's especially important to make sure we have enough money for when we undergo and recover from a lung transplant which a majority of us will get. During this time a CF patient will not even be able to leave the hospital for weeks even months. How can we fight to get out of this everlasting circle of poverty?

We must find a way for Cystic Fibrosis patients and other terminal illnesses from birth to get a different consideration when it comes to social security. There must be a way we can get a bill passed that allows us to receive more than what we do, without work credits, since we're not given the chance to earn them ourselves.

Please sign this petition so we can start a conversation with the law makers about the changes that need to be made. We need your help. We want a chance to live a normal life like everyone else, but are unable to because of this Social Security Disability law.