Nicky is my precious boy, I absolutely adored him! 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. There are only about 600 patients with RDEB like him in the United States. He scratches/blisters extremely easily.
He had 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 webbed and contracted, he had a g-tube to supply nutrition to him, as his esophagus was in bad shape. He had to be covered with bandages from head to toe to prevent new wounds and protect the existing ones.
Regardless of his condition, Nicky was and is my light and inspiration, the love of my life. He passed away from his condition on Dec 5, 2021.
For more information about Epidermolysis Bullosa, please visit my website at http://www.ebinfoworld.com
I, too, have a skin disorder that is irritated by the sun’s rays. I am photo sensitive and get a rash on my body (which is painful) when I spend too much time outside. My prayers are that the Good Lord heal you, Nicky.
Your Friend in America,