Epidermolysis Bullosa: Worst Disease You Never Heard Of

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Bath Time Is the Worst of All

Amy Sneed Barrios, a local TV reporter who has become a friend of the family, said she recently witnessed bath time. "It was pure torture for the little boy. He cried and shivered the whole time," she said.

Roth writes in her blog that sometimes they forget Tripp's brain is "intact 100 percent."

"He knows when we are whispering about it, or trying to spell the word 'bath,'" she writes. "We even renamed it, but he figured that out, too. He's just too smart. He can sense my anxiety, too, I think."

Still, the boy has developed the ability to play the drums, when his sores have receded enough for him to stand up, which he has been unable to do for the past two months.

Recently, Kevin Clash, who is the voice of Sesame Street's "Elmo," was so impressed, he wrote a special song for the boy.

Roth said she could not handle the exhausting medical routines and emotional exhaustion were in not for her mother, Anita Hotard. The family, devote Catholics, say they draw from their faith, and each other.

"We just do what we have to do," said Hotard, who is one of seven and raised three children of her own.

Roth has now moved in with her parents.

"We were given a little angel and we have to take care of him," said Hotard, 51. "I would hope anyone would do the same. It has its rewards and he is happy because his mom is so happy. She is always upbeat around him because that is what he deserves. He is in so much pain."

"If he can do it, I can do it," she said. "I don't have near the agony and stress he has."

Their hope is for Tripp to be pain free and to live a normal life. "But I am not sure that will happen," she said. "He is here for a reason and a purpose, and I am assuming God is not finished with his mission."

But Hotard admits her daughter has her "trials," and Roth choked on a few tears when her mother whisked away Tripp so she could talk to ABCNews.com.

"I don't know how I would do it without my mom," Roth said. "We really lean on each other. … We take care of each other and when she is tired, I pick up the slack and she picks up the slack for me."

Roth writes in her blog that she sometimes wishes that God would take Tripp "home" so he wouldn't suffer anymore. "It's a terrible, guilty feeling," she said. "I go through so many emotions a day that it's not even funny."

But Christie Zink, a Minnesota mother of three who learned about Tripp's story through social media, said meeting Tripp for the first time compelled her to advocacy.

"When I found her blog, I stayed up an entire evening reading it," she wrote to ABCNews.com in an email. "I knew that I had to reach out to her. .. .I felt incredibly compelled to do something."

Since then, she has helped raise funds for the EB community through a video dedicated to Tripp. Zink, a photographer, also helped organize an awareness event at Louisiana State University in October. Afterwards, she met Roth and was allowed to watch Tripp bathe.

"Seeing his pain first hand and watching his mom and grammy so beautifully care for him, was humbling to say the least," writes Zink, 36. "Out of the corner of his eye, one tear started to fall. I watched as it ran down his face and at that moment his pain became so real that I could feel it and my heart broke. That tear just really spoke a million words."

To learn more about epidermolysis bullosa and to help, go to the http://www.debra.org (DEBRA) or the Puck Fund.

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