Justin was diagnosed with CEP ( congenital Erythopoietic Porphyria. The most crucial symptoms of this disease is photosensitivity to the sun that lead to blistering, sever scarring, loss of facial features, and possible loss of fingers. Other common symptoms include increased hair growth, brownish-yellowish colored teeth, enlarged spleen, vitamin shortage, bone fragility, and shortened life span of red blood cells. We have been to various doctors. We went to a porphyria center in Galveston, TX. It was more experimental. The only Cure for this is a Bone marrow Transplant. Which is very costly. He is on medicaid but they keep denying to pay for any of it because they feel it is "experimental!" Justin is a very strong, outgoing, caring, and full hearted loving guy. He always has a positive attitude and is willing to help anyone when in need. You would never know from meeting him that he is in pain from the blisters on his hands or face. Right now this disease has attacked his eyes. They are considering doing a cornea graft, but there is only a 90 percent chance it will be successful and a 10 percent chance he will lose his eye while performing the graft. If he decides not to have the graft done he will lose it anyways. So very upsetting news. His good eye is starting to thin now as will. Hopefully they have caught it enough early on they can save it. He also has an infection and a cist on his right eye. They started him on eye drops and ointment. He has to see a specialist every day in either Omaha or Scottsbluff until this is cleared up and then discuss further options. So we will be making long trips everyday as a result I will be missing work to take him, gas to get there, and food. Also not being able to work as much will leave us in a bind to pay our monthly bills. We have two beautiful little babies as will.  Are son Brayden is 20 months old and are daughter Brylee is almost 8 months. Making these trips back and forth will take a financial toll. We appreciate any help more than you will know. I know God won't give us more than we can handle. So I am going to let this be in God's hand to help guide us and give us strength no matter how hard things seem. Thank you so much and God Bless.