(Voiceover) Trinady Kufeldt was six years old when she got a
terrible, persistent pain in her stomach. At first, doctors told
her to keep an eye on it. Maybe it was the flu or E. coli. Kids
got those illnesses all the time. But after Trinady started
having diarrhea and bloody stools every day, sometimes up
to 16 times a day, it became apparent that this was no
ordinary illness. She wasn't absorbing her food. Her face was
sinking in. She had dark circles under her eyes. And the
excruciating pain wouldn't go away. She was referred to Dr.
Jason Soden at Children's Hospital Colorado. He found
severe swelling in her intestines and ultimately
diagnosed her with Crohn's Disease.
(Dr. de Zoeten) The way I explain Crohn's disease to
children is their immune system
is overstimulated and it seems to be attacking their own
intestine, which can cause them to have the pain that they have,
the diarrhea they have, difficulty growing.
(Voiceover) Over the last five years, Trinady has undergone several
tests and treatments. She has tried steroids, injections,
infusions. Most of them helped the Crohn's disease, but the
side effects were too severe for Trinady to continue using them.
(Mom) I think the hardest thing is not being able to help them.
You know, she's in so much pain all the time, and we can't fix
her. We can't take away her pain. (Voiceover) At age 11, she
tried nutritional feeding with little success. And she
underwent exploratory surgery that was inconclusive. Every
time, a glimmer of hope one day led to unbearable pain the next.
Few patients with Crohn's disease have it this bad. Many
people have it under control, and some have even gone into
remission. But at some point, it is likely that the 1.6 million
Americans suffering from inflammatory bowel disease have
experienced discomfort and debilitating pain. For those who
suffer, simple joys like pizza parties, sleepovers, and family
trips become a stressful hunt for the least offending food and
the nearest bathroom. It can feel like an endless loop of
hope and disappointment where it seems like things never really
change. Depression hovers. Researchers have spent years
investigating the cause of Crohn's disease. Eighty years
after it was first described, the answers to this illness
remain elusive. There is still no cure. But where there is
courage, there is hope. (Dr. de Zoeten) Trinady has an inner
strength that not every kid has. She sees a wall in front of her,
but she's willing to climb that wall and go through it and get
over it so that she'll get better. (Trinady) Some people
look at me--I'm in a lot of pain--but they look at me and
they say, "You look perfectly fine." And it's because I have
lived with pain for a really long time now, and I know how to
hide it. I want to be strong for other people and show them that
I can do this, like, I want to be a normal child right now.
(Dr. de Zoeten) We're getting closer. I see that there is
gonna be an end to this. I can see that the medicines that
we're coming up with are more and more potent and much better
and with less side effects. And at some point, I think we're
gonna be seeing a possibility of a cure. (Trinady) I just want to
get this cured. I want some way to figure out how do we get
this, how can we get rid of it. Those are my two main questions
I've asked doctors and they say, "We don't know right now, but
we're gonna figure it out."