Baby with rare skin disease beating the odds

Friends, family plan holiday benefit for Tripp

Courtesy photo

Tripp Roth, who was born with a condition that causes blisters and sores, sits on Santa’s lap.

Courtney and Randy Roth have beaten the odds for over a year in keeping their infant son, Tripp, alive. Tripp was born in May 2009 with a rare skin disease called junctional epidermolysis bullosa, or JEB. The condition causes blisters and sores to form on Tripp’s skin anywhere that friction occurs, which means that he cannot play, crawl or even have his diaper changed without irritating his skin.

Anytime something touches his skin it could cause a blister or sore. The open wounds often lead to infection in children born with JEB and doctors estimated that Tripp would not live to see his first birthday.

Now, 17 months later, Tripp is still alive and fighting for his life.

“Each day has only brought on more struggles for Tripp…as the disease progresses, it only gets worse,” Courtney said. “Every day (Tripp) amazes us by his strength. He is a fighter and with all he has been through, he has never given up. He is the strongest person I know. He wakes up each morning with a smile on his face.”

Courtney said that there is no treatment for JEB except for supportive care. Tripp deals with skin infection every month, has sores in his mouth and teeth decay because there is no way to clean his teeth, and has had five eye surgeries in the past eight months. He is also fitted with a tracheotomy to breathe and is treated with morphine ever four hours.

“We never leave the house unless it’s to go to the doctor or to the hospital,” Courtney said. “He is at such a high risk for infection and I don’t want to put him at a higher risk than he already is.”

Every day is a challenge, but Tripp has already defeated the odds by living over 12 months.

“I was so overwhelmed when Tripp made a year old. There are so many mixed feelings about this for me. Of course I want my man to live as long as he can, but the reality of the disease is that there are about two adults in the world that are living with (JEB),” Courtney said. “But I will say that each day that Tripp is with me is a blessing and each day that I get to know him, and know his personality, will make it harder…to have to say goodbye.

“That is why I am hoping for a miracle cure for him.”

Now Tripp just has to survive to see that miracle cure and locals are rallying around him to try to help.

Friends have organized multiple fundraisers and events to help cover Tripp’s medical expenses since his birth and to raise awareness about JEB.

“I have never felt so much support from family and friends in all my life. It’s amazing to see how people are coming together because of Tripp. You find out who your friends really are,” Courtney said.

There is a “Randal ‘Tripp’ Roth Benefit Fund” account set up at First American Bank in Norco that accepts donations for Tripp. There is also a “Christmas Trot for Tripp” event on Dec. 11 in Hammond. The event is a 1-mile fun run and 5k run/walk that will include refreshments, inflatables by Jump ‘n’ Jive and Dream Jumpers LLC, and face painting for kids.

The event starts at 8:30 a.m. in Cate Square Park. Entry is $20 and includes a shirt. Shirts can also be bought for a $10 donation by those who do not wish to participate in the run/walk. Strollers and wagons are welcome.