Oct. 8, 2007 — They love laughing, singing, jumping and playing. They are full of life and full of love just like other children. The only difference is they were born with Down Syndrome. The community came out recently to celebrate them and raise awareness of the hardships they face daily.
More than 70 families, friends and supporters of children with Down Syndrome participated Monday in the first Buddy Walk on St. Croix, organized by Rebecca Russell. The crowd gathered at the Hannah’s Rest corner in Frederiksted and walked about two miles to the Midre A. Cummings children's park.
Yellow, white and blue balloons carried by the participants floated in the afternoon breeze as the march proceeded through Frederiksted. Each participant, from the youngest to the eldest, wore Buddy Walk T-shirts and carried big smiles on their faces. Residents came out of their shops and paused in their daily routines to watch and wave to the marchers. Russell organized the event in honor of her three-year-old son, Melchiah Moonbelly, who was born with Down Syndrome.
Russell said she hopes the march will raise awareness of the challenges the condition places on children, their parents and family, and especially the education system. She said the special-education program in the public schools "needs a lot of help," particularly in the areas of speech and physical therapy.
"Some parents say their children have not had speech therapy for six years and that is wrong," Russell said.
Children with Down Syndrome benefit from speech-development, vision and physical therapy. "We need this to be consistent," she said.
The only way for parents to ensure their children are getting the best education possible is to be fully involved in their education, Russell said
"Parents have to be diligent,” she said. "We can't rely on the government."
According to the website Answers.com/Health, the circumstances leading to Down Syndrome happen at the time of conception where a baby is formed with 47 chromosomes instead of 46. That one extra chromosome in Down Syndrome is labeled number 21. For this reason, the existence of three such chromosomes is sometimes referred to as Trisomy 21. Some physical characteristics of Down are a flat facial profile, an upward slant to the eyes and a large tongue in relation to the size of mouth.
Michelle LaCoss has been working with V.I. Find, an agency that advocates for children with disabilities, for the past 12 years. Her son, 14-year-old Jordan, was born with Down Syndrome. Over the years she has observed some patterns in children with Down Syndrome as well as their parents.
"They seem to come in spurts," she said, referring to children born with Down Syndrome. "The year my son was born there were six. It could be environmental — we have a lot of pollutants here."
At the children's park, as the children ran laughing to be the first ones on the swings and slides, LaCoss addressed the parents. She emphasized that all children are entitled to a free and quality education despite their handicaps. She pleaded with the community not to discriminate against children with disabilities, and urged parents to give their disabled children extra love and support at home because when they leave home they will be faced with discrimination and treatment that other children don’t normally face.
Yulette George held on to her squirming 2-year-old, Nyah Robinson. Nyah is a pretty little girl with her curly hair only halfway tamed into several cornrows. Only after you notice her beauty do you notice the tell-tale signs of Down Syndrome.
"I was sad," George said when she found out that Nyah was born with Down Syndrome. "I knew her road was going to be rough, but I would not have her any another way." George also has a 4-year-old daughter who was born without the syndrome.
Nyah attends the Department of Health program for children from birth to age 3.
"She's getting speech therapy and occupational therapy," George said. Right now George is trying to get Nyah into Early Head Start, but is having trouble finding the right people to enroll her child. The lack of both awareness and appropriate educational services is something that George thinks about often.
"Down Syndrome is a mosaic — there are children with more severe and less severe conditions," George said. "But if they are given the services and opportunity, they can succeed. That's what I want for both of my girls."
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