"Rare Butterfly Baby" Newborn w/ EB

Nathan Jace Clayton was born 5/29/2015 and has been diagnosed with EB. Epidermolysis Bullosa, or EB, is a very rare genetic connective tissue disorder that affects 1 child out of every 20,000 births (that means about 200 children a year are born with EB). EB is actually a group of disorders that share a prominent manifestation of extremely fragile skin that blisters and tears from friction or trauma. Internal organs and bodily systems can also be seriously affected by EB. The list of secondary complications can be long and may require multiple interventions from a range of medical specialists. As of today, there is no cure or treatment. Daily wound care, pain management and protective bandaging are the only options available.

Nathan is currently in the Neonatal Care Unit in Centinniel Hospital where he's attached to a feeding tube and has constant morphine for the pain caused by blisters on his hands, feet, torso, and in his mouth . These blisters have to be cleansed and medicated 2-3 times a day and rewraped to prevent potentially lethal infection. Once Nathan can return home he will continue to require extra special care and attention . He is going to need silk onesies, special diapers and bottles, and special detergent because of his extremely fragile and sensitive skin. The diapers are going to cost around $30 for 20 diapers, and a newborn silk onesie starts at $40. As he gets older these everyday costs will only increase, as will his medical care.

Right now the parents are in the Ronald McDonald house so they can be close him, but that will only last for a month, and they are going to need all the help they can get. Every little bit helps and will be greatly appreciated by his parents and family. I will also be keeping this updated with his current condition and outlook.