Help Bailey Get To Special Skin Clinic in Denver | Medical Expenses - YouCaring.com
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Help Bailey Get To Special Skin Clinic in Denver

$18,267raised of $10,000 goal
100%

Organizer: Julie Beneficiary: Bailey Hyder

Help us find answers! We are trying to move forward with his care by taking him to specialists in Colorado.

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Fundraiser Details

If you wish, donations can be made on this website securely with PAYPAL, or can be mailed to: PO BOX 19054 Panama City Beach, FL 32417. Thank you so much for your prayers and considering a donation...Please read Bailey's "story".

When Bailey was just 3, the sickness crept in. He went from a healthy toddler to a sick, sick little boy. His skin constantly inflammed, open and weeping. Next came severe allergies, new medicines, lots of testing, weekly treatments and several hospitalizations.  After nearly 6 1/2 years of trying any means possible, Bailey's doctors had no real solutions to his illness. They know it is immune responses, but have no diagnoses or treatments that we haven't already explored. He has been seen in by specialists in KY, TN, FL and had numerous consultations with other specialists from across the country that partnered with Vanderbilt Childrens Hospital. After years of failed attempts of helping him, in the fall of 2011 we moved away from friends and family to settle near the beach where Bailey could have a better atmosphere for his skin. Doctors hoped the sun and salty water would be very healing for Bailey. It has worked wonders for him in the fact that the bath water here doesn't burn him, he gets lots of sunlight (to replace the 3x a week PUVA treatments we were doing back in TN), and the salt water is very healing to his skin. Although it hasn't been a cure, it definitely is more tolerable and he isn't in pain as much as before. The blisters and rashes still get better then worse again, so here we are....just treading water. Barely keeping our heads up. We have recently found that his immune issues are causing allergies to bacteria on his skin {which is almost impossible to completely stay germ free}, so he is having allergic reactions more frequently due to that. Three more drs have seen Bailey since moving here (here in PC, in Orlando, and in Ft. Lauderdale). The consensus seems to be to try the National Jewish Hospital in Denver, CO. We are hoping to be covered by some financial assistance, but it will be a 2-3 week stay and the total cost for the trip is around $40,000 before insurance. We have set our goal at a random amount near what we are told most families end up paying total. We will adjust our goal as more info on our specific bill become clearer. Our bills now are around $16,000 ( some of which are old from hospital stays, testing, and treatments. Then a large chunk for recent test for a genetic disease..which was negative)and the thought of tacking on new bills, flights, hotels, rental cars, and eating out for 2-3 weeks are enough to scare a person to death. Our hope is to raise some money to make this trip happen. I have never been willing to let anyone step up and do a fundraiser for his bills because they were always payable. If we add any more, this is not going to be the case. We are barely paying what we owe now. God is always faithful and has always blessed us more than we deserve. More than anything, we want Bailey to lead a normal, happy childhood. To be able to enjoy playing with friends, going to the beach, all the normal things. His condition limits everything in his life from food to sleep. He has lived his life popping pills, going from dr to dr, shot after shot, treatment after treatment, wet wraps, creams, lotions, allergic reactions, bandages, blisters, peeling skin and pain. Our child has never had a day since the age of 3 when this all started that he wasn't in some sort of pain or bothered by blisters and itching. Thank you so much for reading his story. Please pass along to your friends and family that may be able to help us out. Also, if anyone has experience with a similar condition, please email so we can chat.  Thank you and God Bless! Together we can make this happen.
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Updates

Updates

06/12/2014
by Julie
Hey guys!! We are so excited. Bailey is making progress daily. Please see the pics I added to this page. God is so good!!!!
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05/14/2014
by Julie
Thanks to everyone who made this trip possible. Bailey is doing well and continuing to make progress daily! We are hopeful that this will work to keep this disease easy to live with. We could not have done it without each and every prayer and donation from you guys. My blog has our day-by-day journey if you would like to read. www.thehyders.blogspot.com
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www.thehyders.blogspot.com">


04/22/2014
by Julie
Updates daily on our trip to DENVER...visit www.thehyders.blogspot.com to see pics and daily logs of our visit at the National Jewish Hospital. Thank you ALL for your support.
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www.thehyders.blogspot.com to see pics and daily logs of our visit at the National Jewish Hospital. Thank you ALL for your support.">


04/13/2014
by Julie
Only 7 days to go! Today was our awesome BBQ fundraiser. We served around 350 plates. I am amazed at all of the love and support we have received from our friends and family. We can truly feel God's love and prescence through all of this. Thank you so much to our supporters! As we prepare to leave this week...money will be one area that we won't be stressing over. To know that we have the money for our flights, cars, hotel accommodations, food, etc means so much to us. Thank you Lord for your abundant blessings!
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04/03/2014
by Julie
Well....It's only 17 more days until we leave. Bailey is getting very nervous and not really ready to go. I have our flights and rental car booked and the first nights hotel stay. We are hoping we will get into the Ronald McDonald House for the other nights, but it is first come first served...so no reservations. Today I am working on getting the last couple of medical records rounded up, pictures of his skin developed (in different stages of breakouts), and checking our packing list the hospital sent us. We had to buy lots of extra socks, pjs, and wet wrap supplies to take with us. Hopefully, we have everything now.
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03/22/2014
by Julie
YIPPEEE!
Our appointment is booked and we just got our flights! We will be leaving in the afternoon on Easter Sunday (April 20) and return (tenatively) on May 3rd. Right now we are planning on 13 nights, but they told us it could be longer. Hoping 13 will be plenty :) Going to to work on finding a rental car and plans for Kirsten next. Right now, I am going to pile in the bed with the whole family and watch FROZEN while we snuggle up! I will keep you posted!
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03/20/2014
by Julie
HEY GUYS!!!

GOOD NEWS! Thanks to all of you, our deposit has been made! They are telling us that our insurance has sent them info on offering much better benefits than before, BUT she did tell me that I should be prepared to owe as much as $11,500 after-the-fact. She said there is always a chance that they can deny certain things as "not covered expenses". She cannot guarantee exactly what our total will be until after the visit. They are going by our $11,500 out of pocket. Anything that they do not cover will be "balance billed" and they do not offer any write-offs or anything.....On a better note, now on to scheduling. They have let our advisor know that we are good to go. Sarah is supposed to call me back and get it on the books!
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03/17/2014
by Julie
Wanted to extend a thank you to some supporters that I can't seem to find an address for.
Mary Kingus
Crystal Williamson
Kristy Griffith
Gary Carter
Harris Harris
Debra Wilcher
Janet Nunley
Rachel Anderson
Doug and Tammy Goolsby
Thank you so much for your generosity and for donating to Bailey's Fundraiser! We appreciate you so much. If you know one of these people personally, please extend our thanks to them :)
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03/17/2014
by Julie
I spoke with our patient advisor just now and she said to be expecting a call anytime to go over our new benefits and to make the down payment. She has sent over my info to the financial counselors and they will be calling shortly (who knows how long that could be...lol). I also got the financial counselors number and called and left her a message to try to speed up the process.  :) As soon as the down payment is made, we can schedule. Our advisor was very sweet and said mainly the hold up was she was out of the office last week and our file just kind of sat around while she was out.  Prayers for a call today. I am staying by the phone. :)
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03/17/2014
by Julie
So blessed by all of you! Thank you all for the out-pouring of help with this bill. We are hoping today to talk with the hospital on the amount we have to pay down. Our advisor has been out of the office and we have been biting our nails waiting for some word on down payment and scheduling.

Bailey has been pretty down the past few days. He spent about 3 days laying in bed and hurting. On the bright side, it looks like the antibiotics are starting to work and he is looking better. Today he has been back to his normal self and working on some school (much to his dismay..lol). Thank you all for you continued prayers and support. I will keep you updated as we know more. God Bless.
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03/03/2014
by Julie
Insurance has accepted our letter of medical necessity and are negotiating with the hospital. Specialists in Orlando "proved" to them that we cannot find help anywhere else. We have tried everything we know to do. Finally, we are almost ready to make our down payment. Hopefully, the hospital will call to schedule our stay in the next day or two. :)
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02/22/2014
by Julie
Got a much-needed letter from Bailey's primary care last week, but the wording wasn't right for our insurance to accept it. They are in the process of getting us a new one (prob on Monday). Specialist in Orlando called and they have a letter that should be here by Wed for our insurance that tells them Denver is the place to go and no treatment is available anywhere near us. Praying our insurance will be forced to provide adequate benefits because of this fact. I will be turning our letters in as soon as I get them in our hands...this should reduce the amount of the down payment to the amount we have raised so far. Please help share our fundraiser so we can afford our nightly fees for Ronald McDonald House, flying, food, rental car, etc.  on top of our down payment that is going to be required, it will be a lot. Love and appreciate you guys so much! We know GOD will provide!!!
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02/16/2014
by Julie
Julie added new pics to the photo gallery
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02/14/2014
by Julie
I just knew today was the day for a date, but....no. After talking with the hospital yesteray, Bailey's bill is going to be very expensive, so they are asking us to pay a deposit down. The amount that would be required down is very large and we simply don't have it. After discussing how much of the bill our insurance was paying, we discovered that it is being considered out of our network and our insurance "sister company" that we were hoping would pick up the rest, is not doing so because it is not considered medically necessary because it is not life-threatening. After lots of talking (and lots of tears) I got the insurance and hospital to agree that if we had letters from DRs stating just how necessary this is and that his current Drs. feel like they can't help him, then they will automatically consider it IN Network....making our down payment and balance signifigantly lower than what they are wanting right now. Hopefully, Monday the insurance will have the hospitals info and the hospital will have our new agreement with the insurance, so then they can work this out. Our couselor has told us this is pretty normal and to hang in there and it will all work. It will just take an extra few days of hammering out the negotitations between the two. You guys fully amaze me each and every day. So many people are contacting me wanting to help and it fills my heart with joy. We love each and every one of you....even those that are reading our story for the first time. God has used so many people to touch us these last seven years. I can't wait to pay this love forward when the time comes. Hopefully I will have some good news and a projected date soon. If we got the call WED, that would put us first available appt the third week of March she said. Fingers crossed and prayers going up. I will let you know as soon as I hear anything else. God Bless you ALL!
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02/12/2014
by Julie
So many people have asked, "what will they do in Denver?"....here is the best explanation I can give at this time. National Jewish Hospital in Denver has a two week program to help kids with the same problems as Bailey's. They treat the skin while training the parents and the child in how to manage skin care. They don't promise to cure him, but hopefully spot triggers and ways to maintain his skin in the best condition it can be. Once the skin is healthy, they will evaluate him for asthma and begin extensive allergy testing and food challenges to identify triggers and eliminate false positives (hopefully opening the diet up to new foods!). They also have psychologists, social workers, child-life specialists, sleep specialists, dieticians, immunologists, allergists, and more to help the parents learn how to provide the best possible care and improve the quality of life for these kids. Thank you for following my posts and for praying for Bailey!!!!! I will keep you updated. I did speak to counselor today, but no news...she said hopefully tomorrow :) (or today since it is 1:15am)
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National Jewish Hospital in Denver has a two week program to help kids with the same problems as Bailey's. They treat the skin while training the parents and the child in how to manage skin care. They don't promise to cure him, but hopefully spot triggers and ways to maintain his skin in the best condition it can be. Once the skin is healthy, they will evaluate him for asthma and begin extensive allergy testing and food challenges to identify triggers and eliminate false positives (hopefully opening the diet up to new foods!). They also have psychologists, social workers, child-life specialists, sleep specialists, dieticians, immunologists, allergists, and more to help the parents learn how to provide the best possible care and improve the quality of life for these kids. Thank you for following my posts and for praying for Bailey!!!!! I will keep you updated. I did speak to counselor today, but no news...she said hopefully tomorrow :) (or today since it is 1:15am)">


02/11/2014
by Julie
Well, some progress is being made...I wanted to give you guys an update. I talked to our advisor today and she said a couple of things had to be double checked with our insurance so that our financial counserlors can fully estimate our portion. They should have got what they needed and should be calling anytime to have us "virtually" accept the terms of his treatment and agree to make payments for the amount. Thanks to you guys we are going to have an awesome down payment! We have also been talking to the Ronald McDonald house this week and they are pretty sure that we can get a room with them. This thrills me to death! It's a little scary not knowing till we get there (they are first come, first served) but she thinks our chances are good. Hopefully tomorrow we will nail down a date so that we can book our flights. Thank you so much to all that have given and especially to all of those that are praying!!! It means so much to us to have all these prayers going up!!!! Love you all!
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02/08/2014
by Julie

Today we have been looking over donations. Bailey is amazed at the out-pouring of support. It amazes him that people he doesn't know have contributed so much and to see how much people care makes him smile. Thank you so much for your generosity. Denver called yesterday and let us know that our case is in the final stages of preparation. We should be able to pick our date anyday. Please continue to help us share and also note that we have 4 other ways you can contribute on Facebook. We have several friends that are donating their commission from the sale of Scentsy, Thirty-One, Origami Owl, and Norwex Products. Please contact me if you are interested in making a purchase that way. Once again, thank you so much for your extreme kindness!!!!

Chris, Julie, Kirsten and Bailey


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02/07/2014
by Julie

Today we have been looking over donations. Bailey is amazed at the out-pouring of support. It amazes him that people he doesn't know have contributed so much and to see how much people care makes him smile. Thank you so much for your generosity. Denver called yesterday and let us know that our case is in the final stages of preparation. We should be able to pick our date anyday. Please continue to help us share and also note that we have 4 other ways you can contribute on Facebook. We have several friends that are donating their commission from the sale of Scentsy, Thirty-One, Origami Owl, and Norwex Products. Please contact me if you are interested in making a purchase that way. Once again, thank you so much for your extreme kindness!!!!

Chris, Julie, Kirsten and Bailey


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02/01/2014
by Julie

I have added some pictures to share. I mostly added pics of his skin in good/avg condition because that is all I had and that's usually when we take pictures {when it's at its best}. These show the fresh {pink} skin after a blistering cycle.


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02/01/2014
by Julie
As of tomorrow, all of Bailey's paperwork will be submitted and insurance deals are in the works. Please be in prayer for the news we will recieve next week when they call. We will also be picking our date of admission next week!!!! It's becoming more and more real.
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