Amelia's Blessings

If you have found your way to this page we would first off like to thank you for visting. Here is a little background on our Sweet Amelia. She was born December 17th, 2012. During my pregancy I was told many times that everything with the baby was fine. At 24wks we were sent to a Specialist to get a "better look at her heart". The day we went we were told everything was fine and nothing was wrong with her heart. Nothing to worry about! Famous last words! The day she was born we went in for a scheduled c-section and awaited the arrival of our second daughter! Amelia was born a little after 8am and was taken to the NICU. My husband came up after about 3 hours to give me what I thought at the time was heart breaking news. He told me that Amelia had Down Syndrome and 5 Holes in her heart. Remember when we were told everything was good with her heart?! We learned that the major hole in her heart was 40% associated with Downs and that it "just didn't appear over night". The next 6 days were spend in the NICU with Amelia and learning all we could about what we had found out. At just a month old Amelia had Open Heart Surgery (OHS) to repair the holes in her heart. We were told after her surgery that she was more sick than anyone had thought and it was a good thing it had been done then. Amelia was put on a specialty formula that could only be bought through a Medical Supply Company. Just 1 day after we came home from the hospital we found out that our insurance company would not cover her formula! And this was the first of many things we would get denied for. At 8 months old Amelia had surgery to place a G-Tube for feedings due to her aspirating on her formula. She also had a Fundoplacation to reduce her reflux. In the months leading up to this surgery we had many therapy appointments and tests done to make sure everything else was going well. We were also appealing for Katie Beckett which is a secondary Medicaid for those with private insurance. We have since been denied 2 times and got our final letter of denial just this past week (November 20th). With co-pays every time we see a doctor, 2 major surgery bills and all the medical equipment needed we are running out of means to provide for our sweet little girl. Due to her heart issues she requires a series of shots to prevent RSV (5 in total). Each shot has to be approved by the insurance company and they denied the first, but then approved it. It isn't guaranteed that they will approve all of them. She needs a helmet for skull reshaping which insurance denied, this costs $3,700! We are now having to apply for a hearing so that she can get assistance from Katie Beckett and for this we will need a lawyer! Everything is adding up and with the cost of driving back and forth between doctors, sometimes 2 a day, formula cost and everything else in the mix it is hard to keep faith. We have been blessed with amazing family and friends who provide support and prayers upon prayers! The power of prayer is truly amazing and we have been touched so much by it! I can honestly say that the prayers are my favorite part and they mean more to me than any thing else. Because of prayer we have our daughter and have been provided for. God kicks me in the tail every time I feel that my faith is slipping by putting people like each of you in my path. My favorite quote here lately is...You have never really lived until you have done something for someone who can never repay you... May God bless each and every one of you for the support and prayers you have offered up for our sweet family! I may never be able to fully repay you but God surly will!


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Shannon Jolly Oberst 
Jackson, GA
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