A second chance at life
What is the value of a phone call?
For kids diagnosed with biliary atresia, a phone call from kindhearted people to other kindred spirits to ask for help can mean a second chance at life.
Rex Daryanani, chairman of the Federation of Indian Chambers of Commerce (Phil) Inc. (FICCI), has proven that a phone call can save a life. In April 2017, a request made by then senator Bam Aquino to Rex proved lifesaving when the senator asked if the chamber could sponsor the airfare of baby Ariella Mendez, her caregiver and liver donor for a liver transplant to be done in a hospital in India.
“That time we needed to raise P100,000 to cover the air ticket of the child, the donor and the attendant (parent). We at the chamber made some calls. To our surprise, we were able to raise that money in five minutes on chat. Sen. Bam and myself were surprised that people actually responded quickly to that call,” Rex recalls via a Zoom interview held at the residence of FICCI president Mukesh Advani (my friend who brought his group’s advocacy to my attention).
That act of generosity by FICCI, the lead business organization of the Filipino-Indian community in the Philippines that was founded in 1951, gave birth to Philippine-India Pediatric Liver Transplant Program.
Biliary atresia, according to online sources, is a rare liver disease that occurs in infants. It is found shortly after birth. The disorder affects the tubes in the liver called bile ducts. If not treated with surgery, it can be fatal.
“According to medical experts, biliary atresia usually occurs in infants between two to six weeks after birth, initially appearing as jaundice, with yellowing of the skin and whites of the eyes,” explains Rex.
“After our meeting, Sen. Bam asked us to join him in giving the ticket to the family at a hotel on Roxas Boulevard. This was the first time that I saw a child that had very dark skin, bloated stomach, a very sick child,” Rex says.
He adds, “After the pleasantries and meeting the parents of the child, to our surprise, there were 10 more children who had the same condition and some of them looked far worse than the first child that we helped. The federation met and talked to these families and understood how desperate the situation was because they needed to raise close to $30,000 for the surgery to be done in India. And there was a need also to raise P300,000 to P400,000 for their airfare, accommodations, as well as post-operative medication.”
The FICCI board met and decided that biliary atresia, through the Philippine-India Pediatric Liver Transplant Program, would become an advocacy of the federation.
“We’ve met different stakeholders. And what we’ve realized is liver transplant is available in the Philippines but it is available at P6 million (per child). And when you have an indigent family that needs the transplant, there’s no way they can afford that,” Rex says.
To get the same treatment in India comes cheaper at P1.5 million, Rex adds.
FICCI partnered with the Office of the President and Sen. Bong Go to continue the project. Rex says a lot of meetings happened between the federation, the Office of the President and the Department of Health until a memorandum of understanding was signed between The Medical City and the Philippine Children’s Medical Center “where we could hopefully start transplants happening in the Philippines with government support.”
Sadly, Rex says, “COVID-19 hit and that slowed down the entire process. The guidelines are still not out and we also desperately need the DOH to take a more active role and that’s really critical because a lot of these patients are on their own.”
So far, the federation has helped 58 children undergo liver transplant in different hospitals in India. The survival rate, according to him, is between 85 and 90 percent.
“Our ultimate goal is to train Filipino doctors, nurses and critical care staff in being able to provide these surgeries in the Philippines. And then critical or complicated cases could be sent across to India,” he says.
He adds that the federation has also designed an MOU between Makati Medical Center and Max Hospital in New Delhi to train Filipino doctors in India. Sadly, again, COVID-19 has put a hold on all of that.
“During the COVID crisis, we were very saddened to know that we lost five children because they couldn’t get to India because of the suspension of flights,” he says.
At the height of the pandemic, the federation mounted a charter flight to fly 12 patients, 12 liver donors and 11 attendants free of charge to India.
“It is critical for the Philippine government through DOH to play an active role to save children with biliary atresia. There is an urgent need for the DOH to really take an active role in helping these kids and have a national program for biliary atresia. It is also critical for corporate donors to band together to help these kids,” he says.
Currently, adds Rex, surgeries are paid for by a German organization called BILD Foundation. “We are grateful for the foundation’s help. The problem is it is limited as it allocates funds only for three to five kids a month because BILD Foundation also helps a lot of kids with biliary atresia around the world,” he says.
How does FICCI choose which kids to help?
“It’s not our call. These kids go through a very disorganized process of pre-operative checks where they are pretty much on their own,” he laments.
The federation is also involved in getting the travel documents of the children, their parents and donors.
“We do our best to help. We partnered with the Indian embassy for free visas of families. AirAsia, pre-pandemic, carried 24 children and their families to India free of charge. We are hoping to renew that partnership after COVID,” he adds.
To help kids with biliary atresia, especially in this most unprecedented time, takes a lot of energy and spirit from the federation’s side. But Rex and the members of the Federation of Indian Chambers of Commerce (Phil.), Inc. are always ready to help, ready to bring change in the lives of children and their families.
“The greatest takeaway from our advocacy is: a phone call to some is a lifeline to others. We would be irresponsible and outright a disgrace to society if we didn’t take on that action to make a phone call. A call to a friend, a doctor, a donor, a call to the airline can be a second chance at life for the children,” he says.
One phone call can save the lives of children with biliary atresia. Rex has proven that many times.
“It is our sworn duty as citizens of this country to help,” Rex ends.
(For more information on the Philippine-India Pediatric Liver Transplant Program, please call 8844-7222.)
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