At 14 years old, West Australian Keera Pittorino was a thriving, active teenager who showed plenty of promise and enthusiasm for her future. Just two years later, having endured months of pain, nausea and weight loss caused by a rare but debilitating intestinal abnormality, Keera would be undergoing major abdominal surgery in the United States to salvage her independence.
What started as a sudden onset of relentless abdominal pain quickly saw Keera having to withdraw from attending school, where she was a bubbly student involved in sports and with a healthy social life.
“The pain got progressively worse,” Keera said.
“I had to prepare myself for pain and vomiting every time I needed to eat."
“I was being investigated for gastrointestinal conditions like Coeliac Disease and Irritable Bowel Syndrome that are aggravated by specific foods, but everything I consumed made my symptoms worse, even drinking water.”
At one point, Keera was sustained via a feeding tube because of her inability to eat without immense discomfort.
Over the course of 18 months, Keera experienced dozens of trips to the hospital emergency department, multiple hospital admissions, a string of misdiagnoses and countless doctor appointments, scans and tests. All the while, her adolescence continued to be hijacked by a horrific cycle of crippling pain.
Eventually, a gastroenterologist reviewed one of Keera’s MRI scans and diagnosed her with Intestinal Malrotation, a congenital abnormality where the intestines fail to form correctly in the abdomen and are positioned in the wrong location. Just 0.02 per cent of the population have Intestinal Malrotation, typically diagnosed as infants, when it is also most treatable. While many are asymptomatic from birth, it is very unusual for symptoms to appear past infancy, as in Keera’s case. Like Keera, patients are often misdiagnosed but if complications are not managed, the condition can result in organ loss and even death.
This diagnosis should have been a turning point in Keera’s health, however, getting effective treatment also presented its challenges.
Given its rarity to present in young adults, the surgical treatment for Intestinal Malrotation in Australia is designed to be performed on babies. With no alternative that could be offered, Keera underwent this surgery as a teenager, along with two more procedures, without success. Doctors said there was nothing more they could do. Meanwhile, Keera’s health and quality of life continued to deteriorate.
Her desperation for answers led Keera on a journey to take her health into her own hands.
“I was searching for another solution and found a Facebook group with people experiencing the same symptoms,” Keera said.
“It was mostly mothers of babies with Intestinal Malrotation, but one referred me to another Facebook group with people of all ages who were having the same experience as me.”
There, Keera shared her story and learned of the surgery that had improved symptoms in young adults, only performed by Dr Kareem Abu-Elmagd at Ohio’s Cleveland Clinic.
“I decided it was the best bet for me to survive, so I started fundraising,” Keera said.
Despite her best efforts, however, the surgery – which takes more than 10 hours in theatre with many months of recovery in the United States – would cost more than $330,000 for medical, travel and accommodation expenses, well beyond the financial means of most families.
With no available government assistance and Keera’s quality of life on the line, the Keera Pittorino Necessitous Circumstances Fund (KPNCF) was established and over the course of a few months KPNCF’s fundraising goal was achieved and Keera’s surgery was booked.
Three years after her symptoms appeared, Keera was on a flight to Ohio.
Keera’s medical treatments in the US would not have been possible had it not been for generous charitable donations to the KPNCF, of which 100 per cent of the money raised contributed to Keera’s surgery.
“The surgery changed my life,” Keera said.
“I went from being in so much pain, so nauseous, fatigued and bed-ridden – I couldn’t even walk into my own backyard – to being almost where I was physically before my symptoms started.
“I have no more pain.”
Although there have been some bumps in the road to her recovery, Keera’s life as she knows it now would not have been attainable without the surgery that enabled her to regain her independence.
“I work and volunteer, and I’m studying Aged Care because I’ve always wanted a job where I can be helping people,” Keera said.
“I have learned not to worry about the things that don’t really matter. . . you have to keep pushing forward.”
Keera’s life-changing surgery was made possible by KPNCF.
At the same time, KPNCF’s founding directors established Madalyn Children’s Foundation to provide more children and their families with timely access to world-class medical care where there is financial hardship or other necessitous circumstances.
If you wish to help young people like Keera who are not financially able to access life-saving and life-changing medical treatments for their conditions, we welcome you to donate to the Madalyn Children’s Foundation.
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