Two months ago Randy and Courtney Roth of Norco welcomed their son Tripp into the world. But shortly after his arrival, the family’s joyous occasion was overshadowed when the infant was diagnosed with a life-threatening skin disease.
Junctional epidermolysis bullosa, a blistering skin condition, is usually severe. In the most serious forms, large ulcerated blisters on the face, abdomen and legs can be deadly due to complicated infections and the loss of body fluid that leads to severe dehydration.
“At first the doctors didn’t know what was wrong with Tripp,” said Randy, who is an assistant director for the St. Charles Parish Department of Parks and Recreation. “It’s an extremely rare disease that our doctors couldn’t diagnose on the spot.”
The signs and symptoms of this condition vary widely among affected individuals. However, in Tripp’s case, the severity of the widespread blistering could lead to vision loss, disfigurement and other serious medical problems.
“When we first saw Tripp he had blisters on his head from the delivery and his fingernails were deformed,” said Randy. “But it wasn’t until a day later, after the doctors had time to research his symptoms, that they were able to diagnose him with JEB.”
Affected infants are typically born with widespread blistering and areas of missing skin. Most often blisters are present over the whole body and affect mucous membranes such as the lining of the mouth and the digestive tract.
As blisters heal, they result in severe scarring which can make it difficult to chew or swallow food, leading to chronic malnutrition and slow growth.
“The treatment for Tripp is similar to that for a burn victim,” Randy said. “We have to use specific ointments and gauze dressings to treat his blisters.”
The prognosis for most infants isn’t favorable. In fact, most babies diagnosed with JEB never live to see their first birthday, but Randy and Courtney are trying to maintain a positive outlook.
“While Tripp’s condition is severe and rare, he’s growing and gaining weight at a normal rate,” Roth said. “And that gives us hope. You want your kids to be healthy and we just pray that Tripp will survive this.”
Residents from around the parish are joining forces to help raise awareness and collect donations for the Roth family.
“We’re not sure what part of Tripp’s treatment and medical expenses will be covered by insurance,” added Randy.
Several fundraisers are taking place throughout St. Charles that will benefit the Roth family.
A men and women’s softball tournament will be held at the West Bank Bridge Park on Saturday, Aug. 8. The cost is $175 per team.
Those who are not able to participate in the tournament, can still donate.
“We will take anything residents have to offer – money, pharmacy and gas station gift cards, prayers or anything else people see fit,” said Neil Legendre, president of the Destrehan Booster Club. “This is a great way to help someone in our community who gives so much to our children. Anything that can be donated is greatly appreciated.”
All proceeds will go directly to the Roth family to help with out-of-state traveling costs for treatments and other medical needs. They have been informed that monthly care, even with good insurance, will exceed $3,000. To participate or for more information on the softball tournament, contact Kristy Kimble at 504-417-4157 or Mark Hebert at 985-974-5007.
A “Randal “Tripp” Roth Benefit Fund” has also been set up at First American Bank in Norco.
As of July 16, Team Xcelerate has also helped raise $3,000 for Tripp’s fund. The initial goal was $5,000, but after seeing what the family will need Team Xcelerate decided to continually try and help generate funds for Tripp.
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