Meet My Son, the Tennis Player

Dinggot Conde-Prieto

Born August 12, 1993, our son was named after his paternal uncle, Jaime, who passed away in
the prime of his life, and his paternal grandfather, Don Benito Legarda Prieto. But he is more
known by his nickname Anito, a tribute to our indigenous pantheon of gods. In the Cordilleras,
anito translates into spirit. Jaime Benito was therefore named after both Christian and pagan
traditions, in the faith that the grace and blessings of the gods from both realms would keep him
in their embrace.

We had reason to seek their protection. Anito was born with what has been diagnosed by the
Boston Children’s Hospital of the Harvard Medical Center as Proteus Syndrome. According to
the geneticist at the hospital, as of 1994, there were only four reported cases of such condition in
the world, with Anito being the first Asian. To date, 11 years after Anito was diagnosed with this
syndrome, there are only 120 documented cases worldwide.

Perhaps more than my son’s condition, what was most agonizing for me was the fact that at the
time of his birth, man had already walked on the moon 30 years before. And yet the best
pediatric orthopedists in the country could give me no answers, not even a name, for my son’s
condition.

No Answers

To this day, we have no answers as to what brought on the syndrome since the specific gene has
yet to be isolated and identified. The Harvard geneticist hypothesized it cold be one of my genes
or his father Mauro’s, or a combination of both.

Despite the incredible heights scaled by modern science and technology, very little is known of
Proteus Syndrome. First identified by Michael Cohen, Jr., DMD, PhD., in 1979, the syndrome
involves the atypical growth of the bones, skin and tissues and a variety of other symptoms.

In 1983, German pediatrician Hans-Rudolf Wiedenman named it after the Greek god Proteus
“the polymorphous,” presumably because of the variable manifestations in the four unrelated
boys first identified with the syndrome.

In Anito’s case, the syndrome has affected his lower limbs, mainly his feet, where the bones are
larger than the fatty tissues around. He wears custom-molded shoes and will probably never have
the luxury of wearing Nike or Adidas like everyone else. In our many conversations regarding
his condition, he has often asked me what he needs to do to have feet like everybody else, to
wear shoes like everyone else’s. I have always answered him with nothing less than the truth:
“Well, you will have to go through surgery and amputation and live with prosthetics.” His
answer? “Nah, that’s too much, mom. I’ll just keep what I have.”

As the situation would not allow me to dwell on the whys and wherefores of Anito’s condition,
I’ve been compelled to look beyond my personal pain and seek remedies rather than answers
where there are none. I wrote to nine different medical centers in the United States, among them
Stanford University, University of California at Los Angeles, Shriner’s, Tufts and the New
England Medical Center. All the verdicts came back the same. They were unanimous in their
recommendation for a Symme’s-type amputation, amputation of the foot just above the ankle, to
be compensated for with latex boot-like prosthetic appliances.

Equal Possibilities

It was only Dr. Timothy Hresko of the Harvard Medical at Boston Children’s Hospital who
requested to see Anito before he made any recommendation. It was laso her where our son, at ten
months old, was brought before an entire panel of senior doctors whose consensus favores
amputation. This, understandably, was not an option as far as we, his parents, were concerned.
We simply were not willing to close the door on our child.

Anito was attended to by Dr Tom Silva of Pediatrics, Gr. Whiteman of Genetics, Dr. Timothy
Hresko of Pediatric Orthopaedics And Dr. Charles Hergreuter of the Plastic Surgery Department,
all from the Boston Children’s Hospital.

I will always be grateful to these doctors for respecting the fact that for every perceived
advantage of amputation, there were equal possibilities for non-amputation. My son’s ability to
walk on his own feet were there, on both options.

After much deliberation, discussion and debate, Anito Underwent surgery for the amputation of
his toes and the debulking of excess tissue in both his feet, and one on his left leg to straighten
his tibia. Although thus far non-progressive, Anito’s condition requires him to undergo
evaluation, ideally every two years and further debulking in more or less the same period.

In the past 12 years, Anito has shown me, and perhaps countless other people who know him, the
resilience, courage and boundless magic of the human spirit. To contend with his condition every
day of his life, where every single step means overcoming his handicap, is commendable
enough. But to do so despite the jeers, taunts, and often cruel stares and whispers that are sure to
cut through the steeliest of hearts, is a feat of incredible courage, fortitude and temperance
beyond my wildest imaginings and infinitely above my own tolerance.

As in anything and everything, the world is never without its anachronisms. While Anito has
shown us the greatness of the human spirit, his condition has also shown us how incredibly
limited human perception can be. Among Anito’s passions is his love of tennis. His choice of
sport and our concession to his passion has been met with much criticism and tolerated with
incredulity at how we, his parents, and his tennis instructor Francisco “PetPet” Santos, Jr., could
possibly encourage him in an undertaking where clearly, his chances for success are almost nil.
His father and Uncle Raffy have, time and again, attempted to steer him towards the less
physically demanding sport of golf. The set of junior golf clubs that Mauro had bought him a few
years ago sits in one corner of the house, unused and gathering dust and cobwebs.

Play among peers

When Anito first took up tennis close to three years ago, Petpet and I trudged the lonely path of
faith and conviction—faith that Anito could learn to play tennis as he wished, and conviction that
he could play among peers who would not be as physically challenged. This faith and conviction
were not entirely our own, but rather were borne out of respect for Anito’s burning passion and
inspired by his sheer determination. Above everyone else, the boy has no illusion of being the
next Roger Federrer. It is clear to him that learning to play tennis is a victory in itself, a conquest
of his own limitations.

Games won, medals and awards garnered along the way were mere icing on the cake.

Because, despite the worst expectations of some people, Anito considers himself an athlete even
among the non-handicapped, he has 17 medals to his name, 13 of the gold, one silver, and three
bronze. He plays against the best youth tennis players of the country, managing a ranking of 36 th
in the 12-and-under category of the Philippine Tennis Association’s Age Group Bracket
nationwide as of March 2005. He plays in national tournaments in various playing venues in the
country, among them the Rizal Memorial Sports Stadium and recently, the Cebu Country Club
where he earned the admiration of spectators, the ball boys, players, umpires and coaches alike.
He does not have half the speed other tennis players have, but is brilliant in court strategy,
adhering to plays Petpet has designed specifically for him.

He also has an unwavering resolve to be like everybody else. Reaching for that ball, he dives,
often falling and rolling on the court, stretching himself beyond his physical limits to return
every ball given him. He will fall—on his chest, his buttocks, his back, his sides. He will be on
his knees, but he will return that ball. It is this that wins Anito the respect of the crowd and his
opponents.

In May 2005, Anito played in the Palarong Pambansa in La Paz, Iloilo, representing
MIMAROPA in lawn tennis doubles, boys’ elementary category. In a back to back victory,
Anito and his partner Mark Garraez again won the gold for the same category in the Puerto
Princesa City Athletic Meet in February of this year. Representing Puerto Princesa, their tandem
went on to compete in the MIMAROPA Regional Athletic Meet in Boac, Marinduque in April
and again won a gold. In May this year, Anito and Mark proudly represented the MIMAROPA
region in the Palarong Pambansa, in Naga City.

To play in the Palarong Pambansa has been Anito’s Big Dream, and ours. As dreams and wishes
come free, we didn’t scrimp. The Dream was just that for the longest time, with Anito’s joining
whichever tournament came his way.

But more than the stiff competition from the best youth players from all regions of the country,
the toughest opponent he opponent he had to contend with is this off-court opponent of limited
awareness and acceptance of the differently-abled. It is an insufferable irony that most people
would rather dwell on Anito’s handicap rather than appreciate the bigger picture of a differently-
abled individual playing in the field and competing with the absolutely-abled.
Far more than being a good tennis player and athlete, Anito’s greatest victory is in being an
exemplar and opening people’s eyes and hearts to the appreciation that there is more to a good
athlete than mere excellence in sports.

Above and beyond physical prowess is heart. It is heart that spells difference between an athlete,
a good athlete and a damn good athlete. It is from the heart that resilience, courage and
determination emanate. In this, Anito’s epic dream, the Palarong Pambansa, there is yet a bigger
dream: that people do not see an athlete made inferior by his handicap; rather, in Anito, they
learn what it is that makes a human being soar above the rest: SPIRIT.

(This article first appeared in the May 9-15 Mother’s Day Issue of Bandillo ng Palawan, vol.8,
no.19. Published, Sunday Inquirer Magazine July 16, 2006)