, SUDAN, Jun 9 – A cocktail of fear, hope and gratitude bubbled inside Reynaldo Nilo’s feeble heart as the Philippine teenager prepared to take his first-ever plane ride for a journey to Sudan aimed at saving his life.
The rheumatic heart disease sufferer and son of impoverished farmers boarded a flight on Monday for Khartoum, the capital of the east African country, to have open heart surgery, without which he would likely die within a few years.
The city hosts a hospital run by EMERGENCY, an Italian charity that is renowned for its state-of-the art cardiac surgery provided for free, usually to people from Africa.
“I am extremely grateful to them for giving me the chance to have a longer life,” the 17-year-old told AFP a few hours before he and his elder sister, Sarah Joy, boarded the plane, a first for both, to Khartoum.
Sarah Joy only found out about the Italian charity after chancing upon an Oscar-nominated documentary about the Khartoum hospital.
Nilo, who had to drop out of high school because of his condition, said he knew little about Africa other than disease and conflict.
“I’m scared because I heard they have Ebola there. I’m also concerned about the wars there,” said Nilo, as he sat beside his tearful elder sister at a relative’s home in Manila.
“But if the Lord wills it, I should be okay and able to recover.”
Nilo had strep throat as a child and, because he did not take antibiotics at the time, it led to rheumatic heart disease.
Without open heart surgery, most sufferers of the disease die by the time they are 20, according to EMERGENCY.
The surgery in the Philippines would cost tens of thousands of dollars, an impossible amount for the son of duck farmers from the remote far north of the country.
– Pain, fear, determination –
Nilo was diagnosed with the disease when he was 15 after suffering from near-daily breathing problems that would leave him blue in the face.
The worst attacks would see his hands and feet seize up with muscle spasms.
Nilo was forced to drop out of school and Sarah Joy became his full-time carer.
Unable to afford medical treatment, she scoured the Internet for ways to relieve his discomfort and learned techniques such as having him breathe into a paper bag.
Soaking his feet in icy water would help to cool and relax him, easing his spasms.
“We were always worried for him. I was scared he would succumb (to the disease), but I steeled myself, determined to show him that we were not giving up,” Sarah Joy said.
“I was desperate to get a job — any job, even as a domestic helper abroad — to pay for the surgery. But I realised it would take more than a lifetime to raise that amount.”
The family was growing increasingly desperate until Sarah Joy last year watched a documentary on television called “Open Heart” about EMERGENCY’s hospital in Khartoum.
The documentary, which was nominated for an Oscar, tells the story of eight Rwandan children with rheumatic heart disease who have the high-risk surgery at the hospital, the Salam Centre for Cardiac Surgery.
The centre, which opened in 2007, is described by EMERGENCY as the only free hospital specialising in complex heart operations in Africa.
From the film credits, Nilo’s sister tracked down the US producer, who eventually put her in touch with EMERGENCY.
The charity, which was set up by volunteer doctors in 1994 and provides free medical care to victims of war, landmines and poverty, agreed to help Nilo.
After the surgery to replace or repair heart valves, Nilo will require medication for the rest of his life, which EMERGENCY has also agreed to pay for.
And Turkish Airlines agreed to cover the cost of the Nilos’ flights, which alone would have otherwise cost years of income for their parents.
“We are just so happy that this foundation (EMERGENCY) agreed to help us,” Nilo’s sister said.
“We were afraid we would lose him.”