Justin Hamilton CEP Warrior: Eye Troubles

For: Justin Hamilton
Nebraska
Organizer: Jenny Gibbs
$2,465
of $3,000 goal.
Raised by 38 donors
82% Complete
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The Story

Justin was born with an extremely rare skin condition called Congenital Erythropoietic Porphyria (CEP) that makes him highly sensitive to the sun. This skin photosensitivity to the sun leads to severe blistering and scarring, as well as loss of facial features, much like deterioration. The main areas affected and most exposed to the sun are his face, ears, and hands. Other health and physical drawbacks Justin has faced include small hands with stiff joints and the lack of gripping due to the high degree of scarring. Because of this, Justin hasn't been able to proceed with his college degree in the HVAC field. Simple things like holding a wrench, buttoning a shirt, or opening a lid to name a few are daily struggles for Justin. He's a true inspiration as he's always figuring out his own ways to manage, physically and emotionally. Like for instance Justin has always enjoyed swing dancing, but because of the lack of gripping he would arch his wrist and that's how his dancing partner would hold onto him. Most recently, Justin had surgery on his thumb due to a severe blister getting infected. It was so bad, they had to take a part of the thumb bone so this has made his mobility in that hand even worse. Justin and his family has visited various specialists from his youth to present. With technology and knowledge of CEP improving, so far the only form of a "cure" is through a bone marrow transplant. This should allow Justin to be in the sun without the horrific aftermath his faces now. There is no known match through Justin's family yet, however faith is guiding him to a solution. Over the last few years, his eyes have been affected by the sun too. One of his eyes has a small crater in the inner white of his eye that with all the struggles has currently lead to surgery. They successfully​ preformed an eye graft and cornea transplant last week. Over the next month he has to make the 4 hour trip to see the doctor once a week to ensure it's not trying to reject the transplant. Eventually Justin will have surgery again to have tissue put on the thin parts and cover his eye with a permanent lens to protect it. This fundraiser is to assist Justin and his family in paying for home bills as his wife hasn't been able to work all last week due to his doctor visits and surgery plus future days off for checkups, medical expenses and prescriptions his insurance won't cover since the doctor is out of state, as well as gas to and from the doctors. Your generosity and prayers are greatly appreciated to help Justin get through this roadblock.

Fundraiser Updates

Posted on June 24, 2017

Posted on June 24, 2017

This week's update on Justin: He is currently fighting a bad infection in his hand. His white blood counts were low because of it, so he has been super tired and low energy. Justin went to the retina specialist in Denver yesterday and they were able to confirm the back part of his eye looks great! Justin also went to the Cornea Specialist, the doctor was pleased with the news from the visit with the retina specialist. With everything in the clear, Justin can proceed with surgeries as needed to hopefully improve his vision in that eye, and the doctor eventually will put in a permanent lens. The doctor wants Justin's eye to relax and heal all up from these last two surgeries before proceeding onto any more surgeries. Justin's is now able to go from weekly appointments to every 3 weeks to Denver!! We are blessed with all the continued support, prayers, and nice words from you all! Thanks again for all the continued prayers!  -Jenny

Posted on June 16, 2017

Posted on June 16, 2017

This week's update on Justin: During his eye surgery today in Denver the doctor took care of the blood clot, moved the cornea where it needs to be, and put in more stitches to help hold in place. The doctor wants Justin to see a retina specialist to preform a test to see the back part of his eye to ensure everything is doing ok in tbe areas not visible. Overall, the surgery went well. Continued prayers! Blessings to all. -Jenny

Posted on June 6, 2017

Posted on June 6, 2017

Update on Justin's eye appointment today: The doctor scheduled for Justin to have surgery in Denver again next Thursday the 15th. The doctor will be putting more stitches in, opening up the pupil more, and fixing a small clot in Justin's eye. Then he'll be back again for his normal check up appointment on the 23rd. We're blown away with all the outpouring support you've all shown for my brother! So far $2270 of $3000 raised in such a short time with 540 shares, it's truly God's handy work! Continued prayers, God Bless you all!!  -Jenny

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