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Kiley Beam hasn't added a story.
Gracie was born with major heart and pulmonary defects on 11/2/10. She is 3 yrs old now and has had 3 open heart surgeries and ove 10 heart and lung cathiterizations.. In april 2013 we found out that there was nothing her cardiologists could do for her anymore that she may need heart and lung transplants. The hospital she was treated at does not offer these things so we travelled to Philadelphia of hope of getting her on a transplant list before she got tooo sick. Then in may we got the biggest shock ever when docs in Philly said they could not offer her anything either. That we are to take her home and love her and we will keep her comfortable when she needs it. that she was not going to survive to see kindergarten. so about a week of me(mom) going crazzy. i could not fathom what they told me. so i wanted another opinion. so we had her records reviewed in Pittsburgh and in Boston Childrens. they both came back with a no. She was way too high risk and nothing they do is going to help. it would make her worse and we can not offer her help. so i got a medical lawyer who helped advocate on Gracies behalf for free which was amazing...and we sent her med records to 25 transplant facilities in the United States with personal pics of us and letters from us and her docs in Hershey....finally in August. we got a call from Natiowide Childrens Hospital in Columbus Ohio. And the better news was they wanted to offer her other procedres besides the transplants that they believed would inprove he quality and quantity of life.. In september2013 she had her first procedure there and it went amazizng/ they got her right lung opened up which was her worse one. Now we leave next week to go back for a left lung procedure and open heart surgery.. the tool this has taken financially is unbelievable. in the middle of all this we had a big fight with the insurance company to even pay for anything out of state......but finally got that figured out now,, Thanks for the supprt and keep up with Gracie on her facebook page. "Saving My Amazing Grace"
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