By Carmen Aquino Sarmiento
IT IS SAID that for a man to have led a full life, he must: plant a tree, beget a son (there you go again, patriarchy!), and write a book. Kenneth Rocher Villa, age 24, was born with Morquio Disease, a rare incurable and degenerative disorder which attacks the spine. His case is far more severe than that featured in The Mighty (1998) starring Kieran Culkin as Kevin, the Morquio sufferer, who walks with braces and crutches. The movie was based on Freak the Mighty, a popular YA (Young Adult) novel by Rodman Philbrick. For Kenneth, the bone called the odontoid process, which should stick up between the first two vertebrae to support his head, did not develop. His spinal cord was gradually compressed, weakening his arms and legs. Kenneth never walked and has needed a respirator to breathe since he was four years old, when his skull came loose from his spine. The first two requisites for manhood are physically impossible for him, but amazingly he has achieved the third.
Practically bedridden for the last 21 years, Kenneth has never attended school. When he was younger, he tapped out old standards like “Somewhere Over the Rainbow,” “Amazing Grace,” and “When You Wish Upon a Star,” on an electronic keyboard. His musical taste then reflected that of his grandmother’s, Edna Villa, the family matriarch. Twenty-four years ago, a stranger had phoned to tell her that a newborn baby, said to have been fathered by Nanay Edna’s youngest son (an OFW in the Kingdom of Saudi Arabia) had been left for her at the Manggahan-Pasig Health Center. Right then, Nat King Cole began crooning “Nobody’s Child” over the radio. Nanay Edna believed the song was God’s way of telling her what she must do.
Just like that, she and her three younger single daughters: Jenny, Heddie, and Marigie, immediately went to the health center and took the baby boy home with them. And so Kenneth Rocher Villa, the foundling whose biological mother had rejected and abandoned him, ended up with three “mama-titas” and a doting lola besides. They have unconditionally devoted their lives and resources to caring for him 24/7. Kenneth’s alleged father distanced himself from the boy, but the Villa women never considered getting Kenneth’s DNA tested to find out if he was really related to them. They believed they were the instruments of Divine Providence meant to save the life of an unwanted sick child.
During his early years, Kenneth’s adoption into the Villa family divided the clan. They were not wealthy and had always relied on their labors. The Villa patriarch, a former OFW, was retired and ailing by then. Kenneth was always sickly and never sat up or crawled. The first four years of his life were a relentless round of visits to various doctors and specialists. Initially, he had been misdiagnosed with cerebral palsy. However, he amazed and delighted the family by speaking in complete sentences before his first birthday. His mama-titas taught him to read, and took him for physical therapy twice a week. He could barely grasp his toys, but that was when he discovered that he could make music on the electronic keyboard.
The older married Villa children urged Nanay Edna to return Kenneth to his wayward biological mother who was already with another partner. They had enough on their hands taking care of the second Villa son, Edgar, an invalid with congenital heart disease who had not been expected to survive past childhood. When Kenneth joined the Villa family, Edgar had reached his early 40s. He always had an oxygen tank. Nanay Edna knew from her experience with Edgar not to give up on a child.
When Kenneth was four years old, his neck collapsed. At the Philippine Children’s Medical Center, the doctors’ attempt to use a bone graft from his hip to stabilize Kenneth’s cervical spine failed. They pronounced him “a hopeless case.” The Villa Family was instructed to undergo bereavement counseling. But Nanay Edna and her three daughters did not give up. After four months in the pediatric intensive care unit, Kenneth went home. He and Edgar became roommates, both dependent on oxygen tanks, with Kenneth on a rented respirator. His mama-titas, none of them with medical training, had to learn to suction him round-the-clock. Edgar would change Kenneth’s oxygen tank. During the five years that Kenneth was flat on his back, unable to even turn his head, his mama-titas took such good care of him that he never even had a bedsore.
Sadly, Edgar passed away at 50, just months before Kenneth would have another surgery at the Philippine General Hospital (PGH) to stabilize his neck. The neuro-surgeon, Willy G. Lopez, performed pro bono the procedure to put new bone grafts, titanium plates and screws to stabilize Kenneth’s skull and spine. Dr. Lopez got his colleagues, such as the orthopedic surgeon Adrian Catbagan, rehabilitation medicine doctor Sharon Ignacio, and the pulmonology specialist Mike Javier to donate their professional services for free too. Months after his successful operation, Kenneth could sit propped up in a wheelchair — a big improvement from having been flat on his back, unable to lift or turn his neck for the previous four years. Now he could even ride in a car, opening up a whole new world. One of his first acts was to draw maps of the vicinity of the PGH and Luneta which he saw for the first time propped up in his wheelchair.
Kenneth reached adolescence, and the music keyboard was replaced with a PC keyboard, then a laptop and a touch screen tablet. Like other teens, he enjoyed videogames such as Warcraft, Final Fantasy, and Clash of Clans. Then he discovered J.K. Rowling’s Harry Potter, and his life changed forever. Soon he was devouring J.R.R. Tolkien, Rick Riordan, and Christopher Paolini. The rich lore of the Dragonlance Saga and Dungeons & Dragons, as well as Japanese anime fascinated him.
“Reading became my passion,” Kenneth relates. “Even when I played games, I found myself focusing more on the story.”
Becoming a writer himself did not immediately come to mind. However, the more he read, the more he wanted to recreate the joy he felt. Encouraging reviews met an early attempt at fanfiction. He set his sights higher, working every day, writing at least 1,000 words daily, getting feedback from friends, revising and rewriting till he was satisfied.
After nearly three years and five full drafts, he completed The Reaper of Iremia, the first part of his fantasy novel The Celestial Chronicles and self-published this on amazon.com/dp/B07TXR23th. The logline and synopsis read:
“Justice for the living. Vengeance for the dead. Judgement to the sinners. Calian seeks one thing: vengeance. After a murder incident during his childhood almost drove him insane, he has vowed to hunt down all criminals. However, one night he fails to stop one such murder, and he soon discovers that it is just the beginning of a more sinister plot. Reneia, Calian’s friend, holds a grudge. During her childhood, she witnessed the assassination of her mother and vowed to capture the culprit at all costs. Ten years later, she becomes an official member of Iremia’s City Guard when history repeats itself; her father is gravely injured in another assassination attempt, and the suspect is Calian. Two friends — one driven by revenge and the other by justice — both are seeking the truth. But as they delve deeper into uncovering the mystery behind all the deaths in the city, they discover that not everything is as it seems, and there is an evil plot behind the incidents; one that threatens all life in Iremia.”
Reviews have generally been positive. The Reaper of Iremia averages four stars on Good Reads. An Ohio-based blogger, Rachel Pope (rpbooklist.wordpress.com) even offered to edit his book for free when she found out that English is Kenneth’s second language, hence certain “unconventional word choices.” Corresponding with his readers has been a bonus to Kenneth’s writing life. Greatly heartened by their warm responses, he is now working on the second part of The Celestial Chronicles and hopes to publish this by early 2020. He foresees at least eight more parts to this saga. Kenneth Rocher Villa has come a long way and still has a long way to go.
The author was with the PAL Foundation which helped Kenneth to find the resources to have his life-saving second surgery, and she sourced his first wheelchair and got a respirator donated. She was also Kenneth’s godmother at his confirmation.
