Tripp Roth is just 2 years old, has never spoken and can no longer see, but gets messages from around the world.
Tripp has a rare genetic disease called epidermolysis bullosa.
A blog started by his mother, Courtney Roth, has spawned a near-continuous outpouring of support centered in his hometown of Ponchatoula and spreading across the nation.
“It’s completely overwhelming,” Roth said in an email. “I never could have imagined that we would receive such a large amount of support.”
The disease, which has no cure, causes the skin of people who have it to blister at the slightest friction, turning even the most routine activities into terribly hurtful events.
The blisters can turn into painful wounds, which can become infected.
“Baths have been, of course, worse than EVER,” Roth wrote on her blog in July. “There are no words to even begin to express bath time.”
The disease also gives Tripp sores in his mouth, Courtney Roth said.
“He has all his teeth,” she said. “And his teeth cause more sores in his mouth.”
Diaper changes can be agonizing, she wrote.
A picture on her blog shows Tripp’s backside bloodied by a diaper change.
Courtney Roth has moved in with her parents, and her mother and Tripp’s paternal grandmother assist in his care, which is focused on keeping him comfortable, she said.
“He’s on a lot of pain medication right now,” she said. “He’s just been lying in the rocker, not really getting up to play.”
The disease has taken Tripp’s sight and he can’t speak or eat either, Courtney Roth said.
She had never heard of the disease until the day that Tripp was born.
“When he was born there was a large blister on his head from the delivery, a few small, scattered blisters on his back,” Roth wrote in an email. “The specialists told us that he would not live to be a year old.”
Even after the diagnosis, Roth did not grasp the severity of Tripp’s condition.
“The whole process has been very gradual,” she wrote. “It took many months and a feeding tube, tracheotomy, several eye surgeries and many other things besides his wounds for me to finally realize how severe his condition was.”
Tripp turned 2 in May, Courtney Roth said.
Epidermolysis bullosa affects about one out of every 50,000 babies born in the U.S., according to the website for the Dystrophic Epidermolysis Bullosa Research Association of America, or DEBRA.
Tripp suffers from a variety of the disease known as Junctional EB, which occurs in about 10 percent of its cases, said Brett Kopelan, executive director of DEBRA.
The disease is an “autosomal recessive condition,” the website says. For a child to be born with it, both parents must be healthy carriers, the website says.
There is no test to detect carriers, the website says.
“It’s a challenging life at best, usually very short,” Kopelan said. “The quality of life is not that good.”
“Children born with Junctional EB usually don’t survive the first year,” Kopelan said. “We term it the worst disease you have never heard of.”
The disease puts a huge strain on families, Kopelan said.
The special bandages that are required can cost as much as $10,000 per month, Kopelan said.
Kopelan said that Roth had not reached out to his group, but that it was following the situation via her blog and Facebook.
Groups on both sides of Lake Pontchartrain have held prayer vigils and fundraisers for Tripp and Courtney Roth.
A Facebook page called “Praying for Trip Roth” had more than 6,880 “likes” as of Friday, and support messages have flooded in from all over the country and some from overseas.
Children with epidermolysis bullosa are often called “butterfly children” because their skin is as fragile as a butterfly’s wing, Kopelan said.
“But a butterfly can survive a rainstorm, so they are really incredibly strong,” he said. “Tripp is one of the kids who typifies this.”
“He is my hero,” Courtney Roth wrote.