Cover Story
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A little girl greets a friend at the Happy Walk event. |
Adeline Lois Harder models for the Down Syndrome Association of the Philippines |
Eliza Winny Rogondo with mom and dad. |
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A proud mom and her child participate in the parade. |
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Jeremy Lapena (left) serves as altar boy during the mass; he is also an accomplished golfer and photographer. |
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Author’s chosen entry in the photo contest. |
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Participats at the Happy Walk event. |
Step up for Down
By Anson Yu
One Sunday last February, shoppers arriving early at Quezon City’s SM North Edsa shopping center were in for a surprise. A marching band was making its way around the shopping mall, followed by people bearing placards and banners.
This was Happy Walk, an annual event – organized in 2002 – by the Down Syndrome Association of the Philippines (DSAPI) to create more public awareness on the birth disorder. A closer look showed some of those in the parade were children with Down syndrome. Joining them were friends and family.
Children with Down carry an extra chromosome which affects in varying degrees the way they grow physically and mentally. The extra 21st chromosome appears during cell division early in pregnancy.
Because of this, many think children born with Down syndrome are a curse or a misfortune. They think these children will grow up retarded and unable to live a normal life.
Not so, says Emy Dee, who has a child with Down syndrome. Early intervention and proper nurturing can help these children live a full and active life, she says.
Dee was one of eight parents that formed DSAPI. Developmental pediatrician Alexis Reyes said it is a support group, so parents could share their experience and information on raising children with Down. Along with Carmencita Padilla as consulting physician, the group first got together in February 1992.
Today, the organization has 3,000 members, with chapters in Cebu, Bacolod and Davao. They have also recently managed to have February declared as National Down Syndrome Month.
The group wants the public to know that these special kids can live happy and normal lives. To this end, they offer a seminar every quarter for parents of children with Down syndrome. “Parents who attend these seminars were usually referred to us by hospitals and doctors. The first thing we do in the seminar is to try and dispel the anger, denial and guilt they feel. Many (blame themselves for the child’s condition.)
“We try to make them understand what really causes Down syndrome. After which, we try to replace the anger or guilt with understanding, hope and love. This way the child will be given a better chance to live a normal life.”
Dee’s own personal experience shows early intervention can help the development of a child with Down. Her son, Edward John, today is a high-functioning individual.
“He is outgoing and can hold a conversation on his own. He can even go online with the computer without any assistance,” Dee says. (See sidebar on p. 10.)
Contrary to expectations, she claims Down syndrome children are usually the easiest to care for. “They are more of blessing as they don’t have to deal with some of the issues that normal children struggle with, such as the need to fit in. They are the way they are.”
The association also organizes fun events, such as the annual Christmas Party, that bring together its members and their families. I went this year with fellow photographer, Luis Martin Harder whose daughter, Adeline Lois, has Down syndrome.
Harder recalls the moment vividly, when doctors told him his daughter had Down syndrome some 18 months ago when she was born. “The initial joy of fatherhood was quickly snapped.”
It was even harder breaking the news to his wife. “My wife didn’t meet our daughter until she was 10 days old. I kept it from her until I was certain that she recovered from her Caesarean operation. She… felt numb as the pediatrician revealed Adeline Lois’ condition. I have never seen my wife so broken.”
But since joining DSAPI, the couple has been optimistic about their daughter’s future. “During Early Intervention Seminar, they invited guest speakers who are experts in their respective medical fields. They provided medical advice as well as encouragement in raising our children. The DSAPI also maintains a database of special schools, therapists, counselors and doctors who assist the parents and the children.”
So far, Adeline Lois is doing fine. “Her developmental pediatrician has graded her as being slightly delayed in gross and fine motor skills. However, her speech is at par with those her age. I think her inclination is toward music as she seems to be interested in sounds made by her toy instruments.”
Today, the couple sees her as a blessing. “Surely, our daughter is a blessing and God doesn’t make mistakes. She may not be like other children but that doesn’t mean that she is less accomplished. God can accomplish much in those whom the world regards as weak and that is our hope.”
Since then, Harder and his wife have become strong advocates of DSAPI and its message. In fact, Adeline Lois is now DSAPI’s image model. The couple is proud that at an early stage, their daughter is already contributing to DSAPI advocacy.
Harder invited fellow photographers to volunteer at this year’s event, which had as a theme “Step up for Down.” Venue was the Skydome of SM North Edsa.
During our briefing, we learned there would be a photo contest and prizes such as camera bags and accessories. To us, that was the opening salvo!
We eagerly began taking pictures of the special children and their families as they were registering. While shooting my photos, a line from the book Fried Green Tomatoes by Fannie Flagg kept repeating in my mind.
One of the main characters, Ninny Threadgoode, in describing her special child Albert, said there was “never a purer soul ever lived on this earth.” That could well describe any of the special children attending the parade that day.
As the sun got higher and the temperature warmer, I entered the Skydome. I was greeted by a fun and festive atmosphere. Activity booths offered face painting, group photos, origami and cookie decorating.
But we photographers were too busy taking photos to join the activities. Aside from our group, there were several other camera clubs documenting the event, so that raised the stakes much higher.
With so many photographers taking shots, I needed to make my photos unique. The message on one of the placards inspired me. It said “Judge me for my ability, not my disability.”
I decided to take photos that show these special children capable of functioning normally and participating in daily life.
After the opening prayer and national anthem, we went to the Block, where the parade would start. By then, I no longer felt like a passive observer; I started to connect with the subjects.
I saw a teenage boy with Down syndrome taking photos of people attending mass; we ended up taking pictures of each other.
When mass ended, the parade began, taking us past shops, restaurants, the department store and cinemas. We made our way from one end of SM North EDSA to the other and then back to the Skydome. The crowd at the mall was amazed by what was going on and cheered us on.
Meanwhile, I was taking shots of the participants and their families. Some scenes left an indelible print in my mind, such as the mother carrying her special infant, the signs carried by the parents and a young girl with a captivating smile.
Even before the parade made its way back to the Skydome, I had already decided to go back and submit my photo for the contest. I turned in a photo of a teenage girl with Down posing in front of a black backdrop.
She was an interesting subject choice: I overheard that she was athletic and participated in races. I felt that it was an intriguing photo because at first glance, one could not tell the girl had Down syndrome; she looked so active and vibrant!
My photo was underexposed and dim. But there was no time to correct it digitally. I decided whether for better or worse, this was going to be my entry.
Over lunch, William Rogando talked about daughter Eliza Winny, 15, who was in the parade. Like many parents, he was saddled with guilt when he first learned Eliza Winny had Down syndrome. But thanks to DSAPI and its early intervention program, he has discovered how precious she really is. Rogando is proud of his daughter’s musical abilities.
While celebrating an uncle’s birthday, he recounts, the children declined to go onstage and sing Happy Birthday. So Rogando and some relatives decided to do it themselves. When they started singing, Eliza Winny went up and joined them. She even got everyone to sing it again!
Rogando’s nickname for Eliza Winny is Angel because she is just that to him: a “little angel.” Aside from early intervention, Eliza Winny also underwent various types of physical therapy as a young child. The cost may seem daunting (around P300 to P400 per hour for some sessions), but he says it is worth it.
Back at the Skydome, a talent show “Simply Amazing” was underway to showcase the children’s talent along with invited guest performers such as singer Aiza Seguerra.
Too bad the deadline for the photo contest had passed. There were plenty of photographic moments that we could have captured during the program. Some of the children did the hosting job, while others participated in a hip-hop dance. Some even learned to master the current popular dance, the dougie, that afternoon!
By mid-afternoon, we volunteers were exhausted and decided to leave even if they had not announced the photo contest winners. But to us it did not matter. We all felt the experience was reward enough.