Special Report: Meet Romeo, born with Ectodermal Dysplasia, a ra - KRISTV.com | Continuous News Coverage | Corpus Christi

Special Report: Meet Romeo, born with Ectodermal Dysplasia, a rare genetic disorder

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It's a genetic disorder that affects almost every part of the body, called Ectodermal Dysplasia and it's so rare that one local boy has never met anyone else like him.

"I feel great, and I feel normal, and I want to keep feeling normal and great, and I don't want anybody to stop me from making me feel how I do." said 10-year-old Romeo Pena, Jr. 

Romeo was born with a specific type of Ectodermal Dysplasia. 

Tina Marie Lara, Romeo's mother, said, "His nails were paper thin, he had no eyebrows, no eyelashes and we never realized it until they pointed it out we just thought he was a normal baby."

it's a genetic disorder that affects Romeo's everyday life. 

Dr. Kevin Hopkins, Plastic Surgeon with Driscoll Children's Hospital, has been treating Romeo for years. Dr. Hopkins said "That affects how you heal, your hair, your teeth, your skin, how you sweat, how you get overheated. I mean it really really complicates things."

Countless doctor appointments and fifteen surgeries later, the 10-year-old still has a long road ahead of him.

Dr. Hopkins said, "So he manages right now but when he becomes a teenager that's when he's going to have more reconstructive things for the upper and lower jaw."

But his mom says he takes it all in stride. Romeo's mom Tina Marie said "He just says 'I am who I am and God made me this way, and I'm happy with myself.'" 

Doctors at Driscoll children's hospital - like Dr. Hopkins - say he may have many more appointments and surgeries to go but through it, all hospital staff says his bravery and courage - he's the one healing them. 

Dr. Hopkins said "He's truly our hero, he's my hero because every day we just show up and what's a bad day for me? I don't drink my coffee or something he has managed to have a smile on his face every day of his struggle, and he's just a wonderful, wonderful kid and a young man, and he's really our hero."

Romeo actually has a chance to meet others with the specific type of Ectodermal Dysplasia that he has. There's a summer program he wants to attend, but he needs help getting there. If you'd like to help Romeo, click on the link: https://www.gofundme.com/50ews7s

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