Toddler with rare skin disease still beating the odds
Courtney Roth holds her 2-year-old son, Tripp, who was born with a rare skin disease that causes blisters and sores.
Tripp is just like any other 2-year-old, according to his mother. He loves music and can be a little bossy now that he is hitting his “terrible twos.” But Tripp is constantly battling for his life.
He was diagnosed at birth with a rare skin disease, junctional epidermolysis bullosa or JEB, which 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.
Because of the disease, Tripp’s body must be wrapped in bandages at all times to protect him from friction and infection.
Almost every week new problems come up with Tripp’s condition or his problems worsen.
“Everyday life for Tripp recently has been trying to prevent him from infection,” Courtney said. “No matter how hard I try…he eventually catches something because of all his open wounds.”
But Courtney has definitely been trying hard to keep Tripp away from germs.
Tripp has not left his house in six months. His doctors make house calls to check up on him, and Courtney bathes and changes his bandages every other day - a process that takes about three hours. Tripp also stays on antibiotics about once every month or every other month and takes morphine every four hours, every day.
Despite Tripp’s condition, Courtney said he is very similar to other children and that he has the best quality of life possible considering his situation.
“I feel that we have given him the best possible care that we could have…We have given him so much love,” she said. “He has reached so many milestones which is just amazing considering all of the obstacles that he’s had to overcome.”
Tripp has recently become infatuated with music and he clicks his tongue, the only noise he can make, to any tune. He also loves banging his drum and shaking his maracas.
Courtney said it feels great to see him beating the odds and living to see his second birthday.
“He is definitely the strongest person that I know. I honestly do not know how he keeps fighting so hard day after day when it hurts me to watch the amount of pain he is in,” she said. “He smiles and pushes through…I think we could all learn a lot from this little angel who hasn’t even spoken a word.”
As for the future, Courtney said that bone marrow transplants have been used in Minnesota to treat children with epidermolysis bullosa, but that the risks of such a procedure outweigh the benefits for Tripp.
“For Tripp, the risk of the transplant is greater than the expected outcome - even if he would live through the transplant,” Courtney said. “I don’t feel comfortable risking his life for this transplant when the results from the children doing the transplant have not been consistently positive.”
While Tripp and his parents continue to fight and wait for a miracle, Courtney said that their family and friends, and even strangers in the community, have been very supportive and helpful.
“The community of St. Charles Parish continues to be of much support to us,” she said. “I get letters of encouragement and support constantly and know of many people who are still donating to Tripp’s fund to help with his medical expenses.
“I want everyone to know how much I appreciate all the support that has been given to our family…please continue to pray for our little boy.”
There is a “Randal ‘Tripp’ Roth Benefit Fund” account set up at First American Bank in Norco that accepts donations for Tripp.
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