“I’m never not in pain”: At 14, Keera’s life changed overnight.

Video by Mamamia

 

Up until the age of 14, Keera Pittorino had a life like any other teenage girl. And then it all changed, literally overnight.

Keera suddenly felt excruciating pain in her digestive system one day, and then the pain just never went away.

After years of meeting with doctors to try and figure out what was causing it, she was eventually diagnosed with a rare form of intestinal malrotation in March of last year.

“It’s something that happens when you’re forming in the first trimester of pregnancy,” she explains to Mamamia.

“In a normal person, their organs will twist and rotate into the right position, but for some reason, in some people, it just doesn’t twist, or it starts moving and then stops.”

Normally, the condition presents itself not long after birth, but Keera, now 16, didn’t even show any symptoms of having it for the first 14 years of her life.

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“For pretty much the majority of my life, I was actually pretty normal. I was healthy and active, until I was 14. That’s when I started experiencing symptoms,” she says.

Keera Pittorino
"For pretty much the majority of my life, I was actually pretty normal," says Keera Pittorino. Image: Supplied

Doctors are still unsure as to why it took so long for Keera to show any signs of the condition.

"Most people have symptoms at birth or early life, so they can't explain why it happened overnight," she says.

"They think it could have been triggered by a growth spurt. Some people go through puberty and they're okay, but that's what they think the main reason for me was."

According to Keera's mum, Maria, even after she displayed the symptoms, it wasn't easy getting answers.

"It was frustrating, because the doctors kept saying, 'Nothing's wrong,' and all of her tests were coming back clear and normal," she adds.

"As a mother, and Keera herself, we just knew something was wrong. But it got to the stage where [the doctors] just said, 'It's in your head. It's psychosomatic.' She just had this pain and that was it, because nothing was showing up."

Maria says it was only through her determination and perseverance that Keera was finally properly diagnosed.

"We had to keep pushing and pushing. We had a lot of the tests redone, and that's how we got the diagnosis, because I pushed and pushed and pushed, and I said, 'I want an MRI done.' That's how we found it," she says.

"Had we not pushed, I think we would still be where we were a couple of years ago."

Keera says she was shocked by her diagnosis, having never even heard of intestinal malrotation.

"The last thing I expected to be diagnosed with was intestinal malrotation. I didn't even know what it was," she says.

"I didn't even think it was possible to be alive and have your organs in the wrong position. I thought you'd be dead if that happened!"

But Maria says there was also some relief in finally knowing what was wrong with her daughter.

"We finally had an answer. We were like, 'Oh, great. We have a diagnosis, and now we can find a treatment for it.' We were referred to a surgeon, because we were told surgery was the way. After two years, we finally saw the light at the end of the tunnel," she says.

Maria says all of those years of not knowing what was going on had been a "nightmare".

Keera Pittorino
"I didn't even think it was possible to be alive and have your organs in the wrong position," says Keera. Image: GoFundMe

But things weren't as clear-cut as they had hoped.

Despite now knowing what's behind the pain, Keera says it has only gotten worse as time goes on.

"All my symptoms are 24/7. They don't go away. Nothing improves it - no medication, no position to lie in, no heat packs, cold packs. Nothing helps," she says.

"I mainly have trouble with eating. I have digestive issues and I have reflux. Eating makes all my symptoms a hundred times worse. I can't go to school. I'm pretty much housebound and bedridden everyday. It's not a very nice life to live."

And there's never a moment when she's not in pain.

"I haven't not felt pain since I got sick, so the pain has been with me, 24 hours a day, seven days, since I got sick," she adds.

"I have pain, nausea, reflux, headaches, malabsorption - pretty much anything you can name, I have it."

As well as affecting her physical well-being, the condition has also caused Keera to be depressed.

"I guess for the time that I'm sick, I'll always be depressed. It's not very nice to be sick all the time," she adds.

Keera says she "very rarely" sees her friends, and only catches up with them "probably twice a year", because she just doesn't feel up to socialising.

"I barely see family even, just immediate family. Just Mum, Dad and siblings," she adds.

Keera says her condition is "very isolating" and she feels "very alone".

Her mum says it hasn't been easy on the family either.

"It's had an impact on all of us. Like Keera said, she doesn't really go out. She used to go to family functions, but that's dropped off in the last couple of years. She's just too ill. Even if we go to a party, she'll come in and after 10 minutes, she'll go and lie down," says Maria.

"And then as a family, we feel guilty... I know it sounds stupid, but you feel like, 'She's suffering, and we're here laughing and having a good time.' Life does go on, but it is hard when it's your child... That becomes your new normal."

Keera Pittorino
Keera says she just wants to "go back to a normal life". Image: GoFundMe

Keera had an operation in August last year, in the hope it would correct her intestinal malrotation, but it proved to be unsuccessful, as the procedure was only developed for infants.

"Her surgeon hasn't done anyone her age. He's done thousands and thousands of babies, but he hasn't done anyone as a teenager, so when we went back to him, he was like, 'I don't know why this hasn't worked, because it's always worked for me in the past,'" says Maria.

And while doctors here in Australia haven't been able to help her, the family is holding out one last hope for a surgeon over in America.

"This surgeon over in the US has developed a new procedure - it's so new over there that it doesn't even have a name - and Keera's spoken to about a dozen people who have had the procedure, and they've had a complete 180 in their health and their life," says Maria.

"They've just gone back to normal, it's been amazing, so that's why we're really pursuing it. We're seeing the results of what it can do and how it can alter your life."

At the very least, Maria says they need to know they've tried everything possible.

LISTEN: What you don't know about your body. Post continues below.

But the operation doesn't come cheap, and the family has set up a GoFundMe page to raise the money they need for the procedure.

"We've raised about $20,000 at the moment, out of about $300,000," explains Maria.

"That $300,000 is just for the operation, so on top of that, we're going to have to come up with airfare and accommodation for the two or three months we'll be over there."

And if she doesn't have the procedure, things are only likely to get much worse for Keera.

"Because my organs are in the wrong position, they compromise the blood flow, and obviously when not enough blood is going in, it will eventually kill my bowel," says Keera.

"It will start off with me not being able to eat anymore, my gut will go into gut failure, so I'll just have to have a feeding tube. Eventually the feeding tube will be too much for my body to handle, so I'll then need TPN (total parenteral nutrition), which is basically where you get all your food through your veins, and then after that my bowel will die and I'll need a transplant. And then the whole process starts again."

Keera says she just wants to "go back to a normal life".

"Obviously I will probably never be what I was before, I'll never be perfect, but even a 50 percent improvement, or even halfway will be amazing," she says.

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