Gift of sight: Looking through AJ’s eyes

John Daniel delos Santos uses protective goggles while playing basketball, his favorite sport.

They never met, but one could say that John Daniel delos Santos, 13, and Antonello Joseph Sarte Perez, 18, saw the world with the same eyes.

The two youngsters share the same cornea, the thin transparent tissue that covers the central part of the eyeball.

Five years ago, Perez—more popularly known as AJ, an ABS-CBN Star Magic talent—died in a car accident.  At about the same time, Delos Santos was in danger of losing his right eye due to ulcers on the cornea.

With the consent of AJ’s mother, Marivic Perez, the actor’s corneas were transplanted to Delos Santos, and to a 28-year-old man named Lawrence Villanueva. AJ died on a Palm Sunday; the transplants were made during Holy Week.

“The pain of losing a child is always there. (But) with AJ’s visionary legacy, we found a positive way of channeling our grief,”  said Perez of son, AJ, who had been a child commercial model for Milo and had graduated to young adult roles on TV and the movies. The mainstay at the All-Star Sunday Afternoon Party TV show also had his own teleserye, “Sabel.”

On April 17, 2011, Perez would succumb to internal injuries when the van he was riding was sideswiped by a bus in Moncada, Tarlac. His father, Gerry Perez, three other passengers and the driver were also hurt. The young actor, who had just turned 18 and graduated from high school at La Salle Green Hills, was the lone

fatality.

His mother would later co-author the book “A Smile of Hope: The Legacy of AJ Perez,” which started as a mother’s journal of grief and would become a finalist in this year’s Catholic Mass Media Awards for books on family.

Memorabilia

In their new home in Quezon City, Marivic, husband Gerry, and AJ’s kid brother, Gello, have dedicated a room for AJ’s memorabilia. It is also a prayer den where the family gathers to remember the young man gone too soon. In AJ’s memory, his parents have set up the AJ Perez Scholarships as well, which supports the Adult Night School Program at La Salle Greenhills, the beneficiary of the proceeds from Marivic’s book.

Eye Bank Foundation of the Philippines, which evaluates donated human tissue or cornea for transplantation, has made AJ its poster boy. In the Eye Bank flyers, posters and other informative collaterals, AJ is described as a “student, actor, son, brother, friend … cornea donor.”

“We were not supposed to know the donor, but somehow we found out it was AJ,” Delos Santos’ mother, Sarah, told the Inquirer in a separate interview. It was a heart-wrenching encounter when the Delos Santos family met AJ’s parents at his graveside two years ago.

Sarah remembered Gerry tearing up.  “I don’t know of parents who are prepared to lose a child. I felt their grief,”  she said.

Sore eyes

Daniel, who was born with a twin brother Denzel in 2003, had developed “sore eyes”  just two months after birth. His mother said it may have been some bacteria or a foreign body that strayed into Daniel’s eye which the baby then tried to scratch. “He became fussy, and he kept crying,” Sarah recalled. Daniel’s cries kept Sarah and her husband Manolito extremely busy. A pedia-ophthalmologist prescribed medication but despite that, the boy’s right eye would turn whitish. It became obvious to the family that baby Daniel had an impaired right eye.

A corneal transplant was the only option, Sarah was told. But they had to wait for the eye nerves and muscles to mature, and for a donor who must be “young, like Daniel, preferably between ages 12 and 18.”

The Organ Donation Act of 1991 or Republic Act No. 7170 allows the transfer of an organ from a dead donor provided it has the consent of the donor’s immediate relative, such as the spouse, parent, siblings or legal guardian. The law was amended into Republic Act No. 7885 on July 25, 1994.

It was Holy Tuesday in 2011 when the Delos Santos family learned from Daniel’s doctor that a cornea was available. “Daniel was excited. I think he was starting to get conscious about his eye,” Sarah said. The surgery started at noontime but extended into night. “The doctors wanted us to be the first persons Daniel would see when he opened his right eye,” Sarah said. “It was the longest afternoon of my life,” she added.

Optical goggles

The surgery cost the family between P250,000 to P300,000, with P28,000 for the processing and evaluation of the cornea. “We prepared for it,” she said. Her husband used to work abroad and now manages a small eatery in their home in Balic-Balic. Sarah works at an event management firm based in Makati.

The Inquirer watched Daniel play basketball for the school intramurals, with optical goggles protecting his eyes. The Grade 8 student at Holy Trinity Academy in Balic-Balic plays like any able-bodied teenager, but fails to score. He apparently needs time to catch up with his hoops.

Among AJ’s memorabilia is his basketball jersey with his favorite number, 17. AJ loved basketball, his mother said. It’s a game that AJ and Daniel, who never met, seemed to share as well.

To this day, Marivic and Gerry admit to being in tears when they remember their firstborn. “Unexpected tears come with the thoughts of our beloved AJ,” Marivic wrote in her book. “We wipe away the tears and end these moments with a smile of comforting peace and a wink up toward heaven.”