Stories of EB Patients

A look into the lives of children with Epidermolysis Bullosa

Kiba Cedeno

Kiba Cedeno

Kiba Cedeno the Warrior King was born on January 16, 2015 with Epidermolysis Bullosa (EB). EB is a rare genetic connective tissue disorder. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, is often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects 1 out of every 20,000 live births and those born with it are often called ‘Butterfly Children’ because as the analogy goes, their skin is as fragile as the wings of a butterfly. There is no treatment or cure. Daily wound care, pain management and protective bandaging are the only options available.

Natasha Starkey

Natasha “Tasha” Starkey

Natasha “Tasha” Starkey of Columbus, Ohio recently lost her courageous battle with EB when she was 23 years old. When Tasha was 19 years old, she was able to overcome the pain of EB and leave her medication for a while to attend her high school prom. A dream she made a reality thanks to the team at the Cincinnati Children’s Hospital Medical Center. Tasha overcame even more obstacles and eventually graduated from Briggs High School in Columbus, Ohio. Tasha was a special young lady who proved that you can do anything you put your mind to. She will always hold a special place in our heart.