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Seth's 2nd surgery in Cincinnati

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A combination of asthma, the flu, and pneumonia almost took my son, Seth, away from me three weeks ago. He's been on a respirator and paralytic medication to keep him from having bronchial spasms. He's also spent the last three weeks in a medically induced coma and recently has started to wake up, terrified, because, due to the paralytics, he can't move and with the respirator and feeding tube he can't talk nor does he feel like he can breathe (the respirator is breathing for him but with all the medications, he doesn't understand that.) Two weeks ago, a surgeon at UNC hospital attempted a tracheostomy, but due to his anatomy (a result of his Hunter's Syndrome), the surgery was not successful and my family had been prepared, by the medical team, for the loss of Seth but refusing to give up without a fight, we begged for other options to consider. After some research, the respiratory team at UNC found Dr. Robert Wood at the Cincinnati Children's hospital who has successfully performed the surgery on another MPS (Hunter's Syndrome)patient's airway (the surgery that Seth needs to save his life) and they are in the process of preparing Seth to be transferred to Cincinnati. Seth's airways have collapsed and he cannoth breathe for himself. He needs stints placed to support his collapsed lower airways as well as a tracheostomy, that will need to be placed through his sternum because his trachea isn't long enough to allow a normal tracheostomy to be placed. It's a lot for one little man to endure, but Seth is a tough kid! I know there are no guarantees in life and his trip to Cincinnati doesn't guarantee a positive outcome but either way, I'd like, more than anything, to either be there for the few weeks that my son is recovering, or to be there with him for every second that God will give me with him.  
     A little over three weeks ago, 1/26/18 to be exact, Seth came home from NC State to work on Physics, a subject that he was having trouble with, and over the weekend he made amazing progress in Physics. Unfortunately, while he was home, he struggled with a cough that really concerned Sarah and I. He swore that he’d had a cold and it would pass, however,  I made him promise me, when I took him back to campus on Monday, that if it hadn’t improved by Tuesday, he’d go see a doctor. 
     He sent me a text that Tuesday letting me know that he had chosen to go to UNC hospital, because his cough had gotten worse and he was afraid he may have pneumonia. He chose UNC because he has Hunter’s Syndrome (AKA MPS 2) a genetic disorder which affects every system in his body, that he was diagnosed with at 3 years old. Thanks to Dr Muenzer, his geneticist at UNC, and a weekly enzyme replacement therapy,he’s, thus far, lived a relatively normal life and had begun to sprout into a young man with a dream of becoming an electrical engineer. 
     I'm asking for help from my friends, family, and community because, even with insurance covering everything for Seth, without the generosity of my community, I don't have the financial ability to travel, get a cheap hotel, and drop work for the next few weeks without some help from those around me. We could leave as soon as Friday 2/23/18, but because of how long we could be there, this campaign will remain open. My goal is based on a rough estimate of what it wold take to cover the expenses for this very scary time in our life. I'd give my own life to hold his hand through what he's about to experience and, if the surgery is successful, the time I'll have working with the doctors on how to help him re-enter life would be priceless. If the surgery is not a success, words cannot express what being with him for those last few seconds would be worth to this daddy. 

If all you can give is some prayers and positive vibes, we like those too. Thanks for taking the time to read our story.
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  • Anonymous
    • $100 
    • 6 yrs
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Organizer

Kevin Satterwhite
Organizer
Youngsville, NC

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