Justin Hamilton CEP Warrior: Eye Troubles

For: Justin Hamilton
Nebraska
Organizer: Jenny Gibbs
Justin Hamilton CEP Warrior: Eye Troubles (Justin Hamilton)
$2,683
of $2,800 goal.
Raised by 46 donors
95% Complete

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 from blisters. Enlarged spleens are also typical, which lead to his rupturing when he was in highschool; so football that he enjoyed playing was limited towards the end of his high school career. Justin wasn't able to proceed with his college degree in the HVAC field because 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 a common grip 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 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 and let him know we've got his back!

Fundraiser Updates

Posted on August 12, 2017

Posted on August 12, 2017

Update on Justin's appointment in Denver this week with the eye specialist: His eye looks less cloudy than his last visit, the doctor hopes it is clearing itself up. He has a small blood clot that the doc said would go away on its own eventually. The doctor doesn't want to do surgery just yet as he wants to wait until the blood clot is gone. The doctor is hopeful since it looked less cloudy that he won't have to do another transplant, just the lens. Justin goes back in a month to see how things are looking then. So the plan now is to continue to let Justin's eye heal and then go from there. Keep Justin in your prayers! -Jenny

Posted on July 29, 2017

UpdateImage

Posted on July 29, 2017

Update on Justin: Recently Justin is fighting what started out to be a blister and then popped close to his lip. (Keep in mind this is not a cold sore or cold blister.) Because it hurts when he tries to open his mouth, he has been having troubles eating and so forth. He also has another sore on his hand that has been painful, no infection as of now, as he started antibiotics as soon as it showed up to hopefully get on top of it and prevent that. He goes back to the eye specialist on the 10th of August and he will find out if he has to go back into surgery for another Cornea Transplant or not. Continued Prayers for a good outcome at the doctor. Thanks and God Bless!  -Jenny

Posted on July 12, 2017

UpdateImage

Posted on July 12, 2017

Justin's eye appointment today: The doctor took some lose stitches out. He said Justin's eye is cloudy looking, which is not good. He hopes when it heals more it will clear up and thinks it's just from everything Justin's eye has been through. But if it hasn't cleared up by next time, Justin will have to do another cornea transplant, then doctor will put the permanent lens in at the same time he does the transplant. If it isn't cloudy the doctor will just do surgery to put the permanent lens in. Justin goes back in a month. Continued prayers requested! -Jenny

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