Baby Tripp Roth lost his battle to this rare skin condition this weekend. Bill Capo profiled Tripp and his mother Courtney in a series of stories on Channel 4, as well as on the outpouring of love and support for the family. In a post on her blog Saturday, Courtney Roth wrote, "My precious angel received his wings today....He took his last peaceful breaths in my arms, in his most favorite spot. Thank you all from the bottom of my heart for the support through this unbearable time." This original story was published in February 2011.
Bill Capo / Eyewitness News
TANGIPAHOA PARISH, La. -- In a quiet, pastoral corner of Tangipahoa Parish at the edge of Ponchatoula, the "Wash Your Hands" sign on the front door is the first hint of the desperate battle underway inside the house.
Courtney Roth spends much of her day, every day, in this rocking chair, holding her 21-month-old son Tripp in her lap. He is fighting for his life. The slightest touch can cause severe skin reactions, so his tiny body is wrapped in thick bandages, ointment protects his eyes, and he has so much trouble breathing sometimes he turns blue, and now he needs oxygen.
But Courtney holds Tripp tenderly, her love for him lighting her face.
"Oh I see an angel baby. I really do, I see an angel, because I know his personality, and I've seen him grow up, and seen how strong he is and what he has been through," she said as tears formed in her eyes.
When you first see Tripp, it can be startling. Any touch can cause parts of his skin to come off and blisters to form all over his body, inside and out. Doctors didn't think he would live to see his first birthday.
"Epidermolysis Bullosa, we found out that it is an inherited, genetic skin disease that causes blisters with any kind of friction on his skin," said Courtney.
"I think it is one in 2 million are born with this, but his particular illness is the most severe form of Epidermolysis Bullosa," said Tripp's pediatrician Dr. Lisa DeFusco of Ochsner Rothschild Pediatrics.
So Tripp's face and head are covered with angry, red blisters, some caused by the movements of his own hands. Courtney said he is actually looking better.
But Tripp just wants to be like any other baby and have fun playing with his toys.
"He's a little ham," said Courtney. "Loves to play, loves music, is sassy, just like a normal 2-year-old."
He can't speak because he has a breathing tube, but Tripp has no trouble communicating with gestures and expressions, and he has learned some basic signals in sign language. He loves ice cream.
"He's amazing," DeFusco said. "I was scared the first time I had him as a patient, because I didn't know how to examine him."
Tripp has lived with pain since he was born; now it is searing, intense, constant agony around the clock. Bathing is three hours of torture, including covering his body in ointment and sterile bandages to protect it from blistering.
When we arrived, Tripp was listless, his face a mask of pain, and he only wanted his mother to hold him. His parents find it heartbreaking to watch.
"There's been months that he has stayed in the rocking chair, and not gotten up," said Courtney. "That's just his little comfort zone, but he still wants me to sing to him, and he still smiles with his eyes closed."
Every four hours around the clock, Tripp receives morphine through the feeding tube in his stomach, and 20 minutes later, he felt good enough to play. These are the times Courtney treasures.
"He has totally changed my life, for the better of course. He has taught me so much about love, and patience. How can you not have patience when you look at him, and what he is going through?"
She is just 25-years-old, wise now beyond her years. Sometimes she can't hold back the tears, but says she never cries in front of Tripp.
"He sees me cry, and he knows it; he knows I'm sad, and I can't be sad in front of him, because he deserves so much happiness."
She has a lot of support. Both grandmothers spend hours each day helping Courtney care for Tripp. The pharmacist will make deliveries, and the doctor will make house calls from New Orleans.
"She never says why me," DeFusco said. "Not once since I've known this family she has never looked at me and said why did this happen to me?"
Courtney said it's been a "long time" since she's been to a movie or a restaurant.
"We order out if I want to get something to eat; we'll order in," she said, adding that she almost never leaves the home.
Fortunately, insurance covers most of the medical bills, but every month this family spends about $1000 beyond that on everything from over-the-counter medications to the fleece-lined diapers that Tripp must have, $25 apiece.
But right now one of the big concerns is making sure he gets the proper nutrition. It is essential for his survival.
"He's getting all high calorie, high protein, high fat foods that I put in a blender and stick through his feeding tube," said Courtney. "Because he is using so many calories just to try to heal and breathe."
Courtney said Tripp looked so perfect when he was born, but he began developing blisters before he even left the hospital. Now he sleeps next to her, and as she watches his brave fight against the pain, she prays for him.
"Sometimes when it's unbearable, and I know it is unbearable for him, you know, you want God to just take his pain away, and he would be pain free. And then other times when he is feeling good, I want him to be around forever. But you know that he'll always be in pain even if he is around."
In this house, they don't plan for the future. Every day is a gift, especially when they see Tripp smile.
Click here to see Courtney's online journal about her son.
If you would like to make a donation to help the family with expenses, visit any branch of First American Bank and Trust and ask to donate to the Randal Tripp Roth Benefit Fund account.