Nicky is my precious boy! He was born November 25, 1996, and was unfortunate enough to come into this world with an extremely rare skin blistering disorder called “Epidermolysis Bullosa”, or EB for short. He scratches/blisters extremely easily.
He has a rather severe form of EB called “Recessive Dystrophic”, which is not only devastating but life-threatening, and does not improve with age, it gets worse. His fingers and toes web and contract, he has a g-tube to supply nutrition to him, as his esophagus is in bad shape. He has to be covered with bandages from head to toe to prevent new wounds and protect the existing ones. His bandages need to be changed often. There are only about 600 patients with RDEB like him in the United States. There are even less that have the same sub-type as he does, called Hallopeau Siemens (Severe Generalized), roughly around 135 in the US.
Because of the rarity of the condition, these children, like Nicky, need specialized care, one that Doctors are hard to find, who are at a loss at times to help because each child is unique. Navigating care, insurance companies, schools and even moving around is something that always presented challenges difficult to overcome with no family nearby to help in any way.
Regardless of his condition, Nicky is my light and inspiration, the love of my life.
For more information about Epidermolysis Bullosa, please visit my website at http://www.ebinfoworld.com
Watch Nicky on a report that aired on FOX11 in April 2014:
And the follow up story that aired in May 2014: