Helping Others: Justins Story

 

As I thought of how I can help someone today, I thought of my cousin.

One of the ways you can help someone is to share their story. Today I'm sharing my cousins story. 

This is my cousin Justin and I. He was born just two months before I was. As a little girl I remember my family telling me that Justin was allergic to the sun. 

 As Justin has gotten older his disease is so much more than being allergic to the sun. You can read his full story below.

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. 

Follow Justin's journey on Facebook or support him through YouCaring.