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Posted: 10/15/2014 8:43:52 PM EDT
With Permission from Striker this is a fund raiser for my son Aiden. Aiden was born with a rare condition known as Proximal Femoral Focal Deficiency/Congenital Femoral Deficiency (PFFD/CFD for short). This condition occurs in only 1 out of 200,000 births. His right femur and hip were affected causing him to have significant leg length discrepancy on the right side. From the time he was born up until recently, he has been followed by Dr. Michael Erlich (Providence, RI) and Dr. Walter Greene (Fayetteville, NC). Since Aiden was six months old he has been fitted with prosthetic/orthodic devices that have helped him to be able to stand, walk and run. Now that he is a little older and both the Doctors and ourselves have a better understanding and idea of a game plan for Aiden's care, we will be heading forward to start treatment to help Aiden's "little leg".
The ultimate goal is to have him be as stable and have as much use of his right leg as possible. Aiden will be undergoing lengthy surgeries to reconstruct his hip (known as the Super Hip Surgery) and lengthening of his leg. We will be traveling to West Palm Beach Florida to work with Dr. Dror Paley, a world renowned orthopedic surgeon. Dr. Paley is one of the most experienced doctors for Aidens condition. Dr. Paley is the creator of the Paley Classification System of PFFD which was developed in 1996. Since Aiden will be needing multiple surgeries that are very complicated we wanted nothing but the best from the best surgeon. Once surgery has started, Aiden will need lengthy stays in the hospital and continued care over the course of several months. We will be staying in the West Palm Beach area while Aiden is undergoing his surgeries and will need to stay in hotels as well as transportation to and from Fl on multiple occasions. This is going to be a lengthy process that he will need to undergo over the course of several years to reach the final goal. We are very fortunate to have health insurance through the military that will be taking care of the majority of the medical costs, however it does not cover the cost of traveling and our stay there as well as a lot of up front costs that we will be needing to have with us. Our first trip to The Paley Institute at the St. Mary's Medical Center will be taking place in December 2014. There we will be having more x-rays and sitting down with Dr. Paley to create a timeline for all the procedures with the first one taking place shortly after this first visit. The first surgery will be to reconstruct the right side of his hip with the Super Hip Surgery. Any and all donations to help us get Aiden to where he needs to be are greatly appreciated. http://www.gofundme.com/Aidenslittleleg |
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[#1]
I'm sorry to hear about your son. My best wishes to him, his surgery and your family.
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[#2]
I'll donate 30,000 hilton points (1 night in a Hilton in West Palm Beach). You'll need to give me some lead time to book it for you and you'll need a CC to check in. Alternatively, I'll donate up to 30,000 Southwest points, which should be enough for a round trip flight with 21 days advance notice. Southwest flies into Ft. Lauderdale. Again, you'll have to let me book it since it's very, very expensive to donate points from Southwest but almost no cost if I book it through my account.
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[#7]
We really appreciate the help,luck and donations!
He was fitted for his new prosthetic today, unfortunately i had manifest for a jump tomorrow so i could not be there. The wife says it all went well and were looking at 2 more fittings before we get the new leg. Hopefully he wont need one after all these surgery's. I will keep you guys updated! |
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[#9]
I'm subscribing, and would be honored to make a donation tomorrow. I'm glad little Aiden was lucky enough to have what sounds like some great doctors.
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[#11]
Isn't this considered a TDY, talk to tricare I believe they should cover or reimburse you for all your expenses since its your dependant and over 100 miles away.
http://www.tricare.mil/travelreimbursement Best of luck prayers sent |
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[#12]
Quoted:
Isn't this considered a TDY, talk to tricare I believe they should cover or reimburse you for all your expenses since its your dependant and over 100 miles away. http://www.tricare.mil/travelreimbursement Best of luck prayers sent View Quote It may or may not be. I passed him my email via IM. I have had to do what he is doing but for other medical stuff and it was all covered. If it is covered I will get him to talk to the right people to get it all covered for free |
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[#13]
I don't know why, but the gofundme site is down for me. Glad to see someone spell the name correctly like my sons, not with a bunch of add on letters and stuff.
ETA: Donated from donald d. eta 2: shared on facebook as well |
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[#14]
If you want to fly on Delta, send me a PM. I'll donate enough miles to cover one roundtrip airfare.
And thank you for your service. |
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[#17]
Thanks everyone again.
Yes we are working on medical TDY although we have to pay upfront and wait for reimbursement and it hardly covers half the trip. Tricare is great for the most part but limits certain things they deem unnecessary. |
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[#18]
Bump
Might be able to talk the wife into a BOTD thread if this goes well. |
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[#19]
Donation made for BOTD!
Hope everything works out and thanks for your service. |
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[#24]
Quoted:
Thanks everyone again. Yes we are working on medical TDY although we have to pay upfront and wait for reimbursement and it hardly covers half the trip. Tricare is great for the most part but limits certain things they deem unnecessary. View Quote The Air Force has the "Airman Family Readiness" and they give free grant money to families facing unexpected medical troubles and many other reasons. My troop got a grant for 750$ for gas money when he had to drive his wife to radiation treatments. I'm not sure what the Army equivalent is but I know each branch has this. there are ways to pay for all of this. Have you talk to your chain of command? Edit This appears to be the Army version it'll either be an interest free loan or if it's 6 grand you need which would cause undue hardship its a free grant you don't need to repay http://www.pica.army.mil/mwr/acs/aer/AER_PcktGuide12.pdf |
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[#25]
I will look into that thanks. Yes the Army does cover most of it with TDY but thr whole process will takes years and trips back and forth. Appeciate thr infor!
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[#26]
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[#27]
Quoted:
I will look into that thanks. Yes the Army does cover most of it with TDY but thr whole process will takes years and trips back and forth. Appeciate thr infor! View Quote Op: check out page 110, do a ctrl+f for "nonmedical attendant" and read op on it: http://www.apd.army.mil/pdffiles/r600_8_10.pdf that should save you leave Fisher house near by: https://www.fisherhouse.org/programs/houses/house-locations/florida-west-palm-beach-va-medical-center/ you get to stay close to free if not free If you haven't already done so, head over to the medical clinic and talk to the Tricare staff as well as the referrals staff. You shouldn't have to pay for much if nothing as long as there isn't a Doc that can do what are you looking to do within 100 miles. Drop me an email and I will help you with all of this, its in your PMs. I have had to do this a lot over the past 2 years ETA: Remember knowing is half the battle. I didn't know any of this under after a few months of paying out of pocket then my boss was like why are you taking leave and paying out of pocket, Tricare should be covering. I feel you are in the same boat as me when it comes to this. Also, since it is a TDY, you should be able to use your GTC. |
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[#28]
Quoted:
Op: check out page 110, do a ctrl+f for "nonmedical attendant" and read op on it: http://www.apd.army.mil/pdffiles/r600_8_10.pdf that should save you leave Fisher house near by: https://www.fisherhouse.org/programs/houses/house-locations/florida-west-palm-beach-va-medical-center/ you get to stay close to free if not free If you haven't already done so, head over to the medical clinic and talk to the Tricare staff as well as the referrals staff. You shouldn't have to pay for much if nothing as long as there isn't a Doc that can do what are you looking to do within 100 miles. Drop me an email and I will help you with all of this, its in your PMs. I have had to do this a lot over the past 2 years ETA: Remember knowing is half the battle. I didn't know any of this under after a few months of paying out of pocket then my boss was like why are you taking leave and paying out of pocket, Tricare should be covering. I feel you are in the same boat as me when it comes to this. Also, since it is a TDY, you should be able to use your GTC. View Quote View All Quotes View All Quotes Quoted:
Quoted:
I will look into that thanks. Yes the Army does cover most of it with TDY but thr whole process will takes years and trips back and forth. Appeciate thr infor! Op: check out page 110, do a ctrl+f for "nonmedical attendant" and read op on it: http://www.apd.army.mil/pdffiles/r600_8_10.pdf that should save you leave Fisher house near by: https://www.fisherhouse.org/programs/houses/house-locations/florida-west-palm-beach-va-medical-center/ you get to stay close to free if not free If you haven't already done so, head over to the medical clinic and talk to the Tricare staff as well as the referrals staff. You shouldn't have to pay for much if nothing as long as there isn't a Doc that can do what are you looking to do within 100 miles. Drop me an email and I will help you with all of this, its in your PMs. I have had to do this a lot over the past 2 years ETA: Remember knowing is half the battle. I didn't know any of this under after a few months of paying out of pocket then my boss was like why are you taking leave and paying out of pocket, Tricare should be covering. I feel you are in the same boat as me when it comes to this. Also, since it is a TDY, you should be able to use your GTC. Ive got the leave all set. We looked in the Fisher house and there was no available the wife says. They have a priority list and other family's were higher up on the OML. Thanks for the info and i appreciate the help. |
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[#30]
With a generous donation from family and all the ARFCOMMERs we are making headway. We got a detailed time line on the process. Were looking at 1 surgery every 4 years and 2 "Super Hip" surgery. For anyone interested on what this is the link is here. Paley Institute
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[#36]
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[#39]
I wish I had the money to send your way. Until then, you and your family are in my prayers.
Sappers lead the way. |
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[#40]
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[#41]
Wish I could have given more.
My sister went through a serious of surgerys as a child so I feel for you. |
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[#46]
Update : Still waiting on the final adjustment on the new prosthetic. Should have one more fitting to go. It wasn't quite right the first time.
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[#50]
Thanks brother.
Got the new Prosthetic in. The only problem is its so wide none of his pants fit over it. Think were going have to cut his pants and sew a zipper on the inside of he leg so we can get them on. Good thing i gave my wife lots of practice sewing my uniforms! |
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