The music of the Aegis, a local rock band, blares in the air. It is Saturday afternoon at the Concepcion household in suburban Caloocan City, north of Manila.

Ricon Janus, fondly called Borek, the 10-year-old son of Marietta Concepcion is dancing to the vocal powers of the Filipino band. He waves his right hand in the air, holds an imaginary microphone on the other and pauses to listen to the imaginary applause of an invisible crowd. He resumes. He stomps his feet and jumps up and down the makeshift concert stage, the family’s living room.

Marietta is rolling over with laughter. Borek’s concert continues. Borek pauses only to sip on the melon juice. And then he dances again to the piercing poetry of Aegis’ famous song Halik that means kiss in the vernacular.

Marietta’s face is a portrait of a glowing mother. The smile, stretched from ear to ear, conceals the weariness of her soul. Marietta and Borek didn’t use to have these carefree afternoons. These moments are in stark contrast to countless nights spent in different hospitals with Borek. Marietta went from one hospital to another to seek medical help for her 10-year-old son.

Borek, after all, has been diagnosed with Down syndrome when he was only five months old. Marietta’s world was shattered.  

“Down syndromes happen in one out of a million cases. The doctor said that in my case, it was due to psychological imbalance,” Marietta said.

Marietta believes the doctor is correct in saying that psychological factors led to Borek’s condition.

As a mother, Marietta carried a heavy burden on her shoulders, mostly due to a troubled marriage. She continues to do so.  

A government employee, 50-year-old Marietta is mother to four children – Maricel, 28, Flavia Cecilia, 22, Ruth Jaelle, 19 and Ricon.

Although married for 30 years, Marietta feels that she has spent most of her time as a single mother. Her husband Ricardo, a taxi driver, has been in and out of their lives. Ricardo worked in Saudi Arabia in the Middle East for three years in the early 90s.

“When he came back to the Philippines, he did not go home to us anymore,” Marietta recounted.

He visited the children, but rarely.

In 1998, when she gave birth to Borek, she was alone in the hospital.

A daughter of an Ilocano couple, Marietta belongs to a brood of 12. She met her husband in Sta. Mesa. He was a neighbor and childhood friend.  “He was 17 years old. I was 18 at that time. There was no courtship. Our parents just forced us to marry because we did not go home one time,” she said.The hastily arranged marriage suffered terribly.

“We were like cats and dogs. After two years, I gave birth to our first child. It was difficult but at that time, I thought I have no choice but to stand by my decision of marrying him,” she said.

Marietta said that most of the time, her husband was in somebody else’s arms.  She believes that her husband saw her as a competitor. That was when he started looking at other women.

A graduate of B.S. Economics, Marietta felt that her husband felt insecure with her educational achievement. This led to a troubled marriage.

When she was pregnant with Borek, all she could think of was her miserable married life. Her husband was rarely around.

When she gave birth to Borek, her husband was not with her.

“I was alone when I gave birth to Borek. Imagine how difficult that was. I was alone in the hospital. There was nobody to sign my son’s birth certificate. My nephew signed it because my husband was not there.  I was all by myself. It was so painful,” she said.

Out of desperation, Marietta called her mother-in-law to look for her husband. She told Marietta that her son was already living with another woman.

Marietta carried the burden all by herself. She went to different doctors to seek treatment for her son’s condition, which is characterized by many disorders. Down syndrome is a chromosomal disorder caused by the presence of an extra chromosome. According to published literature, it is named after John Langdon Down, the British doctor who described the syndrome in 1866.

It is generally characterized by a combination of major and minor changes in the structure of the person. It is also associated with some impairment of cognitive ability and physical growth but the common characteristic is the difference in facial appearance.

Individuals with Down syndrome suffer from developmental disabilities. The degree of developmental disabilities varies from mild, moderate to extreme.

The physical characteristics of children with Down syndrome include oblique eye fissures with epicanthic skin folds on the inner corner of the eyes, poor muscle tone, a flat nasal bridge, a protruding tongue, a short neck and white spots on the iris known as Brushfield spots.

There is no single cause of Down syndrome and experts attribute this to a host of factors including complex gene and environment interactions.

The most common manifestations of Down syndrome are the characteristic facial features, cognitive impairment, congenital heart disease and hearing problems.
Other less common serious illnesses include leukemia, lung problems and epilepsy.

More often than not, individuals with Down syndrome have a speech delay, requiring them to go through speech therapy to improve expressive language. They also experience delays in their motor skills, with some children starting on walk only at around two years of age.

Because of her son’s condition, Marietta had to spend days, weeks and months in different hospitals.

There was a time when her husband brought them to the hospital and just left them there. At that time, Borek was suffering from heart problems.
Marietta had no choice but to watch over her son with no husband beside her.

“I would report for work in the morning, get some papers and then proceed to the hospital where I would go be able to be with Borek and at the same time finish my paperwork,” she said.

But Borek’s troubles did not end here. When he was seven years old, he was diagnosed with the deadly Kawasaki syndrome, an inflammation of the arteries.

With no other recourse, she simply went to church to pray. She also asked her friends to light one candle each for Borek’s recovery.

After a while, Borek recovered, without the costly vial.

Still Marietta’s expenses for Borek did not end here. Borek also needed therapy.

This was when she sought the help of the Philippine Charity Sweepstakes Office (PSCO), a government charitable institution.

She enrolled Borek in the institution’s center for young children with disabilities.  Its goal is to lessen the burden of the immediate families of people with cancer and other dreaded diseases.

The then five-year old Borek was admitted to the center and was accommodated for six months.  He studied at the center where he received developmental and speech therapy.Marietta saw Borek’s progress. “After that, his speech really improved,” she said.

These days, Borek continues his education in a Church-run school near the family home.

Borek has learned to recognize colors and responds well to music. He also loves watching television.

Marietta looks at these achievements as major victories. She sets aside her troubled relationship with her husband just to give everything to her children, especially Borek.

“You have to be able to handle everything because you are a mother,” she said.

She wishes that there would be state-run schools also for children with disabilities such as Borek, just like the state-owned public schools for normal children.

Her journey isn’t over. She expects more bumps along the way. But for now, she is savoring her carefree afternoon with her son -- giggles, music, laughter, Aegis and all.

Borek continues to sing at the top of his lungs. She sits on his mother’s lap and looks at her eye. They laugh together. He feels safest in her arms. This is his world.

(I interviewed Borek’s mother last year for a book project. While his story is still very fresh in my memory, it especially comes to mind now in the run-up to the United Nations Summit on the Millennium Development Goals in September. I strongly believe that children with Down Syndrome and other disabilities have as much access to health care and primary education, embodied in Millennium Development Goal 2, as individuals with no disabilities do).