Since 2010, we have had the privilege of working with hundreds of patients. Each has a unique and special story.
Here we share some of the stories that have left the strongest mark on us in the hope that we can continue to improve the stories of many more patients in the future.
Five years ago a compelling photograph of 12 year old Arminda, by our volunteer photographer Mathew Lynn, made the front page.
Before surgery Arminda was too sick to eat. Like many children in Timor-Leste, Arminda suffered from rheumatic fever. This left her heart valve chronically inflamed and closed to a pinhole.
Weak and with little appetite, she was fading away. Arminda was rushed to Melbourne for a high-tech mitral balloon procedure with leading cardiologist, Professor Richard Harper. Arminda was the smallest, and youngest, patient Professor Harper had treated. He was unsure if the catheter used to position the medical balloon in the heart valve would fit in her femoral vein.
Despite some anxious moments, the procedure was a success. A day after the surgery she was walking around the block, breathing normally for the first time in years. Now she is back at school.
From a frail child to a flourishing young woman – what a difference a healthy heart makes.
“When I finish school I want to become a heart doctor so I can help find ways to make people better,” Arminda said.
A complex electrical fault in Paulo’s heart threatened to destroy his childhood, and his ambition of studying to become an engineer.
Wolff-Parkinson-White syndrome caused Paulo’s heart to race crazily and made him breathless, dizzy and sleepless. He couldn’t go to school and or play soccer with his friends.
In 2016 Australians rallied to help, donating $20,000 to the New Heart for Paulo appeal. Paulo had high-tech keyhole surgery to remove the “faulty wiring” at University Hospital Geelong. Soon afterwards, he was well enough to have his first taste of AFL football, with East Timor Hearts Fund ambassador, Western Bulldogs champion Lin Jong.
In 2017 Paulo returned to Australia for some further fine-tuning, this time with his dad Fimomeno, who also had heart surgery in our first ever dad and son double.
Paulo’s now back at school, working toward his goal of becoming an engineer. In a heartfelt thank you note, Paulo wrote: “I am forever grateful and will always have a special place in my heart for each and every one of you.”
At just four years old, Nelsia is one of East Timor Hearts Fund’s youngest patients. During the 2018 Operation GoodHearts paediatric surgery mission, 10 young patients, including Nelsia, had their heart defects repaired.
Before the surgery, Nelsia was always tired and breathless. Now she can play with her friends and her younger sister and brothers. Her parents are excited for Nelsia’s future and hopeful she will enjoy good health and go to school.
Just six months after her surgery, Nelsia and her dad Nelson travelled to Australia, thanks to generous sponsors, to raise funds and awareness at the Run Melbourne fun run.
Nelsia breezed through the five kilometre walk and was excited to collect her medal at the end. “We encourage people to support East Timor Hearts Fund because they help many people with heart disease in our country Timor-Leste,” Nelson said.
School teacher and mother of three Bete was born with ventricular septal defect or a “hole in the heart”. She was too sick to teach, and feared not seeing her children grow up.
Had she been born in a developed country, Bete’s condition would have been diagnosed and treated in infancy. But a lack of specialist cardiac care in Timor-Leste meant Bete had to live with increasing breathlessness, pain and worry.
Now well, Bete is able to return to work, play soccer and volleyball and be with her family. In 2017 Bete was our Run Melbourne ambassador. “I never thought that I would ever be healthy again, let alone running five kilometres” she said.
“I would like to say thank you very much to the doctors, donors, and everyone who was involved.”
Paediatric nurse Teresinha was born with a heart defect that would have been fixed in infancy in a developed country.
Although Teresinha works at one of Timor-Leste’s top public hospitals, the young nation does not yet have the specialist skills or equipment for the complex procedure she required.
Teresinha had previously suffered clinical heart failure; without treatment her prospects were grim.
In 2016 Teresinha came to Australia for a technically complex procedure at Royal Melbourne Hospital to repair her patent ductus arteriosus (an abnormal connection between the large vessels in the chest near the heart). Surgeons used a high-tech self-expanding cardiac plug made of Nitinol, an alloy of titanium and nickel.
Teresinha is now be able to see her infant son grow up, and has returned to work at Hospital Nacional Guido Valadares in Dili.
“East Timor Hearts Fund is such an amazing organisation. There aren’t enough words to say thank you,” Teresinha said.
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