Help Bailey Get To Special Skin Clinic in Denver

For: Bailey Hyder
Organizer: Julie
$18,267
of $10,000 goal.
Raised by 102 donors
100% Complete
This fundraiser is closed. Thank you for your support!

The Story

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.

Fundraiser Updates

Posted on July 28, 2014

Posted on July 28, 2014

Several have asked for an update...so he we go!
Bailey is doing so well. He is really loving all of this food he can eat now and loving not having to take food with him. Parties and church gatherings are so much fun when you can eat like everyone else. At first his little belly was pooching from all the food he was consuming, but it has went back down and he is eating back to normal now that he has tried everything again.
He is really enjoying the summer and having so much fun at the beach. He has been swimming, surfing, and paddleboarding so much he actually got swimmer's ear, but that is healing and all better.  :) The water doesn't burn and the sunscreen doesn't get in his skin and irritate like before. We are so happy! We have had so many great beach days as a family since coming home.
My sweet boy is wearing shorts and short sleeves for the first time in years. He is not ashamed of his skin and loves being comfortable in whatever he chooses to wear. He actually got a few new outfits while in Denver that he would have never wanted before. His shoes are new and have no blood stains! He loves his 2 new pairs and wants to wear them all the time. Shoes were really a pain before.
Treatments have been going good and we have a little hospital area set up in his bathroom with all the needed things for baths and treatments. He is taking 2-3 baths a day. Meds and cream following each one. At night he takes a wet wrap and sleeps in it all night. This will be cut back this week. I just got off the phone with the hospital in Denver. Today he will step down to level B of treatment, which is only one step away from maintenance. They say the redness may never fully go away because his skin was gone or open for so many years, but we can live with scars. It will be a reminder of all he has overcome.They have been so kind in helping us along the way and going above and beyond to help B. They seem to care about him and his quality of life just like they were our close friends. I have sat here and cried and feel like such a baby...but they are tears of happiness. They have truly changed his life and given him his childhood back. I thank everyone who has helped us in this journey.We could never have done this without you! God is good. He always provides.

p.s. For those that may be curious about the bills and how close we are to having what we need...we have not gotten anything but some EOB's from our insurance. They say there are more coming. We have gotten no bills yet from the hospital and it seems everything is being billed out individually instead of one huge bill. Every dr, lab, and room bill are all seperate. I will keep you posted on this and let you know! Thanks for all your help and kindness!

Julie, Chris, Kirsten and Bailey

Posted on June 12, 2014

Posted on June 12, 2014

Hey guys!! We are so excited. Bailey is making progress daily. Please see the pics I added to this page. God is so good!!!!

Posted on May 14, 2014

Posted on May 14, 2014

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

About the Organizer

Report Fundraiser

Report Fundraiser

Please report potential fraud and Terms of Service violations only. Personal disputes will not be reviewed.

We require this in case we need to contact you for further details.*

* YouCaring will not distribute your phone number to any third parties or use it for marketing purposes.

Comments

Supporters

Add Our Donation Widget to Your Site
Grab Our Widget

Help Bailey Get To Special Skin Clinic in Denver

Grab Our Widget