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SusanPass79

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Freshman

Posts: 16

SSI - 2009/02/26 23:57 My daughter has Cystic Fibrosis and I have been so worried about whether she'd be approved for SSI by her 19th birthday, I lost ten pounds in one month. Her birthday is Mar 7th and she would have had no insurance. SHE GOT APPROVED FOR SSI LAST WEEK AND we already got our backpay!!!! Thank GOD!!!!!! Isnt he good!!!! There has been a lot of prayer, believe me.

Susan Pass Livingston

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laurie1

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Graduate

Posts: 1442

Re:SSI - 2009/02/27 04:12 I'm so glad Susan! It's been a long, hard road for all of you. I know it's great waking up in the mornings knowing she's gotten the help she needs.

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mtflorio

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Sophomore

Posts: 56

Re:SSI - 2009/02/27 04:56 Praise God Susan! I knew she would get it eventually once you got the lawyer involved. For those who have never been through the social security disability process you can not understand what it is like and the treatment you get from the government workers. Fact is most people are initially turned down and give up out of frustration. Susan needs a pat on the back for not giving up.

Mike Florio
Class of 1977

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ida76

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Graduate

Posts: 652

Re:SSI - 2009/02/27 05:44 Awesome, Susan. Prayer works wonders.
Hope to see more of you on the site.
Love your pic !

Aida

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SusanPass79

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Freshman

Posts: 16

Re:SSI - 2009/02/28 20:52 Thanks for all your support! Mike, Ida and Laurie

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llkerley2001

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Graduate

Posts: 558

Re:SSI - 2009/03/01 12:28 Congrats Susan...Glad all your hard work paid off. T know the government agencies are not easy to deal with but what is right is right! It should not take so much for law abiding citizens to get help from the programs that are out there to "assist" us! Lisa Kerley
Class of 79

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SusanPass79

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Freshman

Posts: 16

Re:SSI - 2009/03/01 20:07 Thanks Lisa, the problem is, unless you know all the ropes, you have to wait longer. The smarter you are about how to get around the system, the faster it will be. Some people have to wait years and years...Our was one year which is fast compared to some but I fought hard. I wrote two senators, the governor, two congressmen, social workers, DFACS, two law suits in the works. Letter after letter from the doctors stating ehr case..only for uneducated people about this disease to read. I have to hear how people dont care about your issue when honestly they do, they just can't help you by themselves and they are trained to be cold. They same people that didnt care, are elated when I tell them the good news. IT was kind of " a see I told you so" when I called them. I wanted them to know I was right and someone else agreed with me.

If she died tomorrow, I did all I could do and that is all I ever wanted for her, is to have a fair chance in life. Looks like she is going to get it. I am so proud because she loves life and God. She is a good person. She never worried for herself. She may figured out a way to be rich and get off SSI but now if she EVER gets really sick and starts to severely go downhill, she can get back on it a lot easier. That was my goal. I couldnt ask for a better blessing. Thanks! Susan

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taterhead3010

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Sophomore

Posts: 121

Re:SSI - 2009/03/01 21:27 just wanted to say thank you back. im so thankful that God gave you the strength and endurance to stand up for your daugther. i pray that God will continue to bless you and your family and take care of your needs. its such a shame that people seeking help have to go through such hell to get a slice of heaven for such a precious child. thank God you received answers to your prayers. i also prayer that the hand of God may touch your daugther and give her the healing that she deserves. may God bless you and your family.

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SusanPass79

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Freshman

Posts: 16

Re:SSI - 2009/03/12 00:42 That is so kind because God has let her live longer than most already. We had the church lay hands on her when she was about two. She claims that healing and expects to live a long normal life. We can only trust that God will let her if thats what she wants. She is christian and I know I did my part to lead her as a parent and I can't do much more. Now I am being asked to go to the capitol in Tallahassee to talk to the legislature. I am proud that I can help influence decisions for other people. I am concerned about the other families as well. We have had to rearrange our lives around her disease and teach her friends and leaders about her disease and how treating it comes first and school and friends come last. She can't have the latter without treating the prior first.

There's no way to tell how many families carry this disease. We didnt know it ran in our family. I understand they test newborns now and parents to find out if they are carriers. I had a lady come up to me in church to tell me she was a carrier but her husband wasn't. YOu have to have two carriers to get the disease and then you have something like a one in four chance. I know people that have twins with the disease. Its not a fun thing to live with. And the important thing is, she didnt ask for it and if they are going to prolong her life from childhood, then they should follow thru for her as an adult and not throw her out to the dogs. Adults are important too if you can even call 19 an adult. I am not so sure it is. I'm 48 now...I think I am an adult now...lol..anyway your words were extremely kind and calming. Love Susan Pass Livingston

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taterhead3010

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Sophomore

Posts: 121

Re:SSI - 2009/03/12 00:55 what a touching response. i believe things happen for a reason and maybe your reason lies ahead when you go to your capital to stand up for others as you have for your own. i pray that God grants you the wisdom, knowledge and strength to speak boldly for a cause that needs to be understood and dealt with in a timely fashion from childhood to adulthood. may God bless you and your family and heal them from head to toe. my prayers are with you and i know you will help others and eyes with be opened and blessings will abound. GOD BLESS YOU.

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