Keera's Malrotation Surgery
Donation protected
Keera was born with an extremely rare birth defect, Intestinal Malrotation. Her health is deteriorating quickly and we are trying to get to the Cleveland Clinic in the USA for major surgery to correct her condition.
She is 16 years old, and up until a few years ago Keera was your typical active teenager enjoying school, spending time with family and friends – just generally living life to the fullest with great aspirations for her future. In December 2015 she started experiencing some horrific abdominal pain that just wouldn’t subside.
For the next 18 months, Keera underwent numerous doctors’ visits, hospital stays, tests, scans, blood tests, over 14 trips to the ED, surgeries and procedures, which all came back “clear”. But still she was in pain and unable to eat. She was told it was all in her head and was given referrals to psychiatrists and prescriptions for anti-depressants. Her quality of life was slowly diminishing and she was becoming depressed thinking that no one would believe her, or help her.
She also tried alternative treatments such as naturopaths, Chinese traditional medicine, hypnotherapy and energy treatment – all with no success.
She was rushed by ambulance to hospital on 3 separate occasions after not being able to eat for days, surviving only on small amounts of fluid. Each time the hospital discharged her saying there was nothing wrong with her – it was most likely constipation, a stomach bug or “women’s issues”.
At the end of 2016 after yet another hospital stay, Keera underwent all the tests, scans etc again from the beginning, as we were adamant that something was clearly wrong. In March 2017 we were finally given a diagnosis of Intestinal Malrotation, discovered by “accident” via another MRI scan. Intestinal Malrotation is when the intestines are all in the wrong position and cause a variety of symptoms including severe pain, nausea, obstructions and weight loss. It is something you are born with, and affects only 0.02% of the world’s population. Symptoms are most commonly displayed within the first year of life; however Keera had not displayed any symptoms until she was 14.
In August 2017 Keera had the Ladd’s procedure (developed in the 1930’s), which is an out-dated surgical procedure made for infants, to alleviate the symptoms of Malrotation. Unfortunately, like so many others who have had this surgery, Keera’s symptoms were made worse, and new symptoms were brought on. Her hopes of returning to a normal life as a 16 year old were crushed.
Her surgeon and specialist were baffled as to why she was still experiencing symptoms, and they have continued to prescribe medications, and refer her for more tests, all with no success.
Determined to find an answer and improve her bleak outlook for the future, Keera began her own research and connected with others around the world that have the same condition. A doctor in Cleveland, Ohio was recommended who is performing revolutionary surgery for Intestinal Malrotation, with a fantastic success rate.
Dr Kareem Abu-Elmagd is the only doctor in the world that fully corrects Intestinal Malrotation. In his procedure he removes a patients organs, assesses them to make sure they are in working order and places the patients’ intestines in the anatomically correct position. This surgery typically lasts 10+ hours, with a 2 week hospital stay, as well as a 2-3 month post-surgery follow up.
As it is a pre-existing illness, no insurance company will cover Keera for this procedure overseas. Also the Cleveland Clinic does not offer payment plans to non US residents. The money we are seeking is simply to cover the cost of this life saving operation and hospital stay only.
Her condition has no cure. At the moment Keera’s quality of life is extremely poor. She lives everyday with pain, nausea, reflux, and intestinal obstructions just to name a few symptoms. Most days she struggles to get out of bed. She has had to be home schooled on a reduced workload as her concentration span is limited. She also finds it immensely difficult to catch up with family and friends, something she loved doing, as she is unable to participate in normal everyday activities without the pain taking hold. She even struggles to keep up with friends on social media and as such is losing many of her friends as she just cant keep up with normal teenager activities.
Without Dr Kareem’s surgery, her condition will worsen. Eventually a volvulus (twist or knotted bowel) will occur resulting in emergency surgery and can even cause death - in as little as 6 hours. Any day she can wake up and her stomach can go into gut failure, resulting in her never being able to eat “normally” again, relying on feeding tubes and eventually needing a bowel transplant.
Her symptoms are 24/7 and no medication or treatment will ever take them away completely. Travelling to the USA and having this surgery with Dr Kareem is her very last chance to go back to leading a somewhat normal life. She has many years ahead of her and she wishes to live them to the fullest and has great aspirations for her future.
Thank you for taking the time to read Keera’s story. As her parents, we thoroughly appreciate your support and donations of any size, to help us help Keera achieve her goal, Please share Keera’s link with all your family and friends, to help us get the life saving help she desperately needs. Thank you sincerely from our family to yours.
She is 16 years old, and up until a few years ago Keera was your typical active teenager enjoying school, spending time with family and friends – just generally living life to the fullest with great aspirations for her future. In December 2015 she started experiencing some horrific abdominal pain that just wouldn’t subside.
For the next 18 months, Keera underwent numerous doctors’ visits, hospital stays, tests, scans, blood tests, over 14 trips to the ED, surgeries and procedures, which all came back “clear”. But still she was in pain and unable to eat. She was told it was all in her head and was given referrals to psychiatrists and prescriptions for anti-depressants. Her quality of life was slowly diminishing and she was becoming depressed thinking that no one would believe her, or help her.
She also tried alternative treatments such as naturopaths, Chinese traditional medicine, hypnotherapy and energy treatment – all with no success.
She was rushed by ambulance to hospital on 3 separate occasions after not being able to eat for days, surviving only on small amounts of fluid. Each time the hospital discharged her saying there was nothing wrong with her – it was most likely constipation, a stomach bug or “women’s issues”.
At the end of 2016 after yet another hospital stay, Keera underwent all the tests, scans etc again from the beginning, as we were adamant that something was clearly wrong. In March 2017 we were finally given a diagnosis of Intestinal Malrotation, discovered by “accident” via another MRI scan. Intestinal Malrotation is when the intestines are all in the wrong position and cause a variety of symptoms including severe pain, nausea, obstructions and weight loss. It is something you are born with, and affects only 0.02% of the world’s population. Symptoms are most commonly displayed within the first year of life; however Keera had not displayed any symptoms until she was 14.
In August 2017 Keera had the Ladd’s procedure (developed in the 1930’s), which is an out-dated surgical procedure made for infants, to alleviate the symptoms of Malrotation. Unfortunately, like so many others who have had this surgery, Keera’s symptoms were made worse, and new symptoms were brought on. Her hopes of returning to a normal life as a 16 year old were crushed.
Her surgeon and specialist were baffled as to why she was still experiencing symptoms, and they have continued to prescribe medications, and refer her for more tests, all with no success.
Determined to find an answer and improve her bleak outlook for the future, Keera began her own research and connected with others around the world that have the same condition. A doctor in Cleveland, Ohio was recommended who is performing revolutionary surgery for Intestinal Malrotation, with a fantastic success rate.
Dr Kareem Abu-Elmagd is the only doctor in the world that fully corrects Intestinal Malrotation. In his procedure he removes a patients organs, assesses them to make sure they are in working order and places the patients’ intestines in the anatomically correct position. This surgery typically lasts 10+ hours, with a 2 week hospital stay, as well as a 2-3 month post-surgery follow up.
As it is a pre-existing illness, no insurance company will cover Keera for this procedure overseas. Also the Cleveland Clinic does not offer payment plans to non US residents. The money we are seeking is simply to cover the cost of this life saving operation and hospital stay only.
Her condition has no cure. At the moment Keera’s quality of life is extremely poor. She lives everyday with pain, nausea, reflux, and intestinal obstructions just to name a few symptoms. Most days she struggles to get out of bed. She has had to be home schooled on a reduced workload as her concentration span is limited. She also finds it immensely difficult to catch up with family and friends, something she loved doing, as she is unable to participate in normal everyday activities without the pain taking hold. She even struggles to keep up with friends on social media and as such is losing many of her friends as she just cant keep up with normal teenager activities.
Without Dr Kareem’s surgery, her condition will worsen. Eventually a volvulus (twist or knotted bowel) will occur resulting in emergency surgery and can even cause death - in as little as 6 hours. Any day she can wake up and her stomach can go into gut failure, resulting in her never being able to eat “normally” again, relying on feeding tubes and eventually needing a bowel transplant.
Her symptoms are 24/7 and no medication or treatment will ever take them away completely. Travelling to the USA and having this surgery with Dr Kareem is her very last chance to go back to leading a somewhat normal life. She has many years ahead of her and she wishes to live them to the fullest and has great aspirations for her future.
Thank you for taking the time to read Keera’s story. As her parents, we thoroughly appreciate your support and donations of any size, to help us help Keera achieve her goal, Please share Keera’s link with all your family and friends, to help us get the life saving help she desperately needs. Thank you sincerely from our family to yours.
Organizer
Keera Pittorino
Organizer
Kiara WA
