[quote]The pain never ends for Tripp Roth, a 2-year-old boy who has outlived all medical predictions with a fatal disease that has taken his sight, speech, and scars his body from the inside out; the severest form of EB, junctional epidermolysis bullosa.
The tiny toddler, who has blisters on his face and hands, has not been outside for a full year. He spends his life swaddled in bandages, being rocked in the arms of his mother, Courtney Roth, or his grandmothers.
Tripp breathes with the help of a trachea tube and requires sedatives so that his caregivers can bathe him, an excruciating process that takes three hours.
Infections and trips to the hospital are never-ending and there is no cure for the disease. The thousands of supporters who have rallied behind the family call it "the worst disease you never heard of."
Born with epidermolysis bullosa, a genetic disorder that affects 1 in 50,000, Tripp is missing skin on much of his body and what skin he does have is as fragile as a butterfly, and can easily erode. He is missing a protein that binds one layer of skin to another.
The disease is a spectrum of inherited skin disorders, whose hallmark is a blistering response to minor injuries, heat or even rubbing or scratching. It affects not only the skin, but anywhere in the body where tissues are held together more firmly: the eyelids, the upper esophagus, inside of the mouth and the genital-rectal area.
There is no effective treatment, other than bandages and antibiotics to avoid trauma and infections.
But Tripp's mother, who gave up a nursing career after Tripp's birth, said she derives inspiration from the remarkable little boy, who just won't stop fighting. Initially, doctors said he wouldn't live beyond a year.
"He certainly astounded his doctors," said Roth, a 26-year old divorcee from Ponchatoula, La.
"He is just amazing. I have always said that from the beginning," she said. "I have never been sad around him and I try not to cry around him. We've made it to where he is in the happiest environment possible. His spirit and personality are what keep me going."
But Roth, herself, has also been an inspiration to others. She recently was named one of ABC's "Personal Heroes of 2011."
She was selected because of the overwhelming number of letters and emails from supporters around the country, many of whom had never met Roth, but read her blog, "EB'ing a Mommy" and a Facebook page, "Prayer's for Tripp."
The blog, which Roth began three months after Tripp was born, has nearly 2,000 subscribers and 3 million page views; the Facebook page already has 30,000 members.
"I started my own Facebook page, but when it reached the friend limit of 5,000, a lady from the community started one for him," Roth said.
"It's also just amazing, the incredible people who pray for Tripp and our family every night," she said. "They say things like, 'He has touched our lives,' "We hug our children a little tighter,' and 'I have more faith and pray more.'"
Roth said Tripp was "absolutely gorgeous" when he was born, with just a small blister on his head, a few on his back and deformed fingernails.
Doctors diagnosed him immediately, but Roth had no idea what the disease meant.
"Then I went online and saw a completely terrifying picture," she said.
Tripp had trouble breastfeeding because of the sores in his mouth and eventually needed a feeding tube. He's still tiny, as well, weighing only 27 pounds in his bandages.
"It's so hard," Roth said. "Obviously he can't speak. He can communicate well, but we have a hard time and from what I can see in his mannerisms, he definitely looks in pain all the time."[/quote]
[video=youtube;B41KkYuX8v4]http://www.youtube.com/watch?v=B41KkYuX8v4&feature=player_embedded#![/video]
Holy shit, that's [url=http://abcnews.go.com/Health/tripp-roths-tears-reveal-pain-epidermolysis-bullosa-strikes/story?id=15173125#.TvD3j9Q9XGU]horrible![/url]
[B]UPDATE[/B]
The baby has died.
[url]http://randycourtneytripproth.blogspot.com/[/url]
jesus fucking christ it's this kind of stuff that make me appreciate the simple/normal life I live.
:29
I wanted to cry and throw up at the same time oh my god.
As harsh as this sounds, I think it's unfair to keep him living.
Fuuuuuuuuuuuuuuuuuuuuuuuuuuuuck dude
That's horrifying.
Where's real-life House when you need him
wow this is just horrible
Morphine Administered. :(
If I had a child who was like this, I wouldn't want him to keep living like that. I know it sounds horrible, but I wouldn't want to see him/her suffer through that or keep living though that.
Why didnt they kill him? Living in CONSTANT agony for a newborn human is already a mental death sentance, not talking about physical.
[QUOTE=TheMustacheHero;33816716]If I had a child who was like this, I wouldn't want him to keep living like that. I know it sounds horrible, but I wouldn't want to see him/her suffer through that or keep living though that.[/QUOTE]
I know what you mean, but seeing that he is not laying in the crib crying and wiggling in pain would make that decision very hard, because he's acting like a normal baby too. Laughing and giggling and doing what babies do even though he has a condition that makes it so that he's in constant pain.
I know this sounds cold, but I hope he doesn't live too much longer.
I wouldn't wish this on my worst enemy.
This must be a living hell for him.
I'm sorry, but keeping him alive is really just prolonging the suffering.
I sure as hell wouldn't want to live like that.
This is awful! Why not just end his suffering? It's not like he'll outlive the disease
It's easy to say "they should kill him" when none of us can even IMAGINE what the parents must be going through.
It's a fucked up situation to be in if you have to choose between killing your own baby or see your own baby suffering.
None of us can comprehend that.
I wonder how pissed he'll be once he gets older.
This seems so painful... I feel sorry for him and his caregivers.
[QUOTE=Raptor_Girl;33816849]I wonder how pissed he'll be once he gets older.[/QUOTE]
He's not gonna get much older, because that disease will kill him before he gets to go to the kindegarden.
What a fucking Trooper, he's lasted this far, what's to say he won't last as long as we do?
[QUOTE=No Party Hats;33816882]What a fucking Trooper, he's lasted this far, what's to say he won't last as long as we do?[/QUOTE]
People can only take so much.
He needs to be terminated.
I know it sounds horrible and disgusting , but come the fuck on. He's in pain already and as the doctors have said , he'll be in the pain FOR THE REST OF HIS LIFE. Think of the many things he WILL NEVER BE ABLE TO DO. It'd be much easier to euthanize him now than him to commit suicide in later life , or the disease will just cause so much that he'll die from it's symptoms.
Having a shit and horrible life that will ultimately lead you to suicide at some point is not a life to be lead.
[B]Jesus christ.[/B]
parents are selfish assholes for not putting this kid of his misery
[QUOTE=No Party Hats;33816882]What a fucking Trooper, he's lasted this far, what's to say he won't last as long as we do?[/QUOTE]
From [url]http://www.ncbi.nlm.nih.gov[/url]
[quote]
Anemia
[B]Death (junctional epidermolysis bullosis has a high death rate, but other, milder forms may not reduce life expectancy at all)
[/B]
Esophageal stricture
Eye disorders, including blindness
Infection, including sepsis
Loss of function in the hands and feet
Muscular dystrophy
Periodontal disease
Severe malnutrition caused by feeding difficulty, leading to failure to thrive
Squamous cell skin cancer
[/quote]
I feel sorry for the kid.
[QUOTE=Hullu V3;33816877]He's not gonna get much older, because that disease will kill him before he gets to go to the kindegarden.[/QUOTE]
Then they should end the suffering. :(
[QUOTE=Instant Mix;33816906]He needs to be terminated.
I know it sounds horrible and disgusting , but come the fuck on. He's in pain already and as the doctors have said , he'll be in the pain FOR THE REST OF HIS LIFE. Think of the many things he WILL NEVER BE ABLE TO DO. It'd be much easier to euthanize him now than him to commit suicide in later life , or the disease will just cause so much that he'll die from it's symptoms.
Having a shit and horrible life that will ultimately lead you to suicide at some point is not a life to be lead.[/QUOTE]
If the doctors say that he won't life more than a year tells a pretty sad story already. Yes, he outlived that prediction already, but how many years can he take? I doubt too many.
If I was in the parents shoes I would want to hold on to every single second with the baby, because I would know that he won't be here long. The child doesn't think "Oh fuck kill me please" in his tiny mind, because he doesn't know what death is.
I would say the parents suffer as much as the baby does. The pain is just different.
If I was in this position, I would definitely want someone to end my suffering.
In the most humane way possible.
What a great mother, people like that give me hope.
[QUOTE=Vaught;33816946]From [url]http://www.ncbi.nlm.nih.gov[/url]
I feel sorry for the kid.[/QUOTE]
What the baby is having doesn't seem mild at all. Pretty severe if you ask me.
[QUOTE=nox;33817007]What a great mother, people like that give me hope.[/QUOTE]
People like that give me quite the opposite feeling. And I say this in the most sincere way possible. This is beyond what I'd call a hope through it story.
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