'Buddy Walk' in Chattanooga raises awareness about Down syndrome

'Buddy Walk' in Chattanooga raises awareness about Down syndrome

September 24th, 2013 by Karen Nazor Hill in Life Entertainment

Madison Greene, front, and Charity Nelson are cheerleaders at Loftis Middle School.

Photo by Angela Lewis/Times Free Press.

IF YOU GO

• What: The Chattanooga Down Syndrome Society's "Buddy Walk."

• When: Saturday; gates open at 11 a.m., walk begins at noon.

• Where: AT&T Field, 201 Power Alley (walkers must register by Friday at noon at www.chattanoogadownsyndrome.org).

• Information: chattanoogadownsyndrome.org.

Madison Greene has the world at her fingertips. Her mom is seeing to it.

"She loves to dance and sing and ride go-karts -- she even drives them," says her mom, Katie Schaublin. "She likes to talk on the phone and loves to aggravate her little sister. She loves going to the beach."

Some things, though, are a bit more challenging to the 14-year-old Loftis Middle School eighth-grader than for others in her age group. Madison has Down syndrome.

"When she was first born I had a doctor tell me, 'Don't be surprised if she never walks, ties her shoes, rides a bike, etc.,'" Schaublin says. "From that point on I was determined to prove that doctor wrong. I am happy to say that Madison has proved this particular doctor wrong."

There's nothing Madison can't do, says her mom.

"I honestly believe the only limitation that children have with or without disabilities are the ones that we put on them," she says. "Madison has a great circle of friends both with and without disabilities. She goes out into regular education classes and also is in a comprehensive development class. She rides a bike, makes straight As, is a cheerleader, plays basketball and so much more. When she says she can't, I say, 'Yes, you can.'"

Madison, her family and friends, as well as more than 1,000 others, will be participating in Chattanooga Down Syndrome Society's 13th annual "Buddy Walk" on Saturday. The event raises money and awareness for people with Down syndrome.

"I think 99 percent of people are aware of Down syndrome but may not know how to act when they encounter a person who is living with it -- or any disability, for that matter," says event spokeswoman Latricia Thomas Milburn, a news anchor with WTVC Channel 9 and the mother of 21-month-old Lila, who was diagnosed with Down syndrome after birth.

"Events like the Buddy Walk show the community that those with Down syndrome are more like you than they are different," says Milburn, a member of the Chattanooga Down Syndrome Society board of directors. "Their potential is almost limitless with the early intervention programs that are in place today. If you believe they can achieve almost anything, they will."

Emily Brandt, developmental and behavioral pediatrician at Siskin Children's Institute and Siskin Center for Developmental Pediatrics, says children with Down syndrome need the same love and affection as children without disabilities.

"While it is easy to get caught up in feeling like you need to turn all your activities into learning/therapy opportunities, remember to take time to simply cuddle with and enjoy the smiles of your little one," Brandt says. "Your love will always be the most precious thing you can give them."

WHAT IS DOWN SYNDROME?

• Most cases result from what's known as trisomy 21, which means each cell in the body has three copies of chromosome 21 instead of the usual two copies.

• The syndrome can cause intellectual disability, a characteristic facial appearance and weak muscle tone in infancy. Everyone with Down syndrome has some delays in brain development, but the intellectual disability is usually mild to moderate.

• The syndrome occurs in about one in 830 newborns.

• An estimated 250,000 people in the United States have the syndrome

• Although women of any age can have a child with Down syndrome, the chance of having a child with it increases as a woman gets older.

Source: National Institutes of Health

FOR HELP

The Chattanooga Down Syndrome Society is a support organization for families who have a loved one with Down syndrome. "We try to have one family networking event a month and have hosted things like Christmas parties, pool parties and workshops that feature information that is helpful on this journey. We also offer scholarships each month to individuals or families who are participating in events in the community where financial assistance might be helpful," says society spokeswoman Latricia Thomas Milburn. Contact her at ltmilburn@gmail.com.

Madison's friend and classmate Charity Nelson, 14, will also participate in the Buddy Walk. In fact, she and Madison will be leading the event. Like Madison, Charity was also diagnosed with Down syndrome. And, like Madison, she's a typical teenager.

"Charity plays basketball and baseball, but her favorite is being a Loftis cheerleader," says her mom, Kelly Nelson. "She is just like anyone else; she just wants to be loved and accepted."

Learning that your baby has Down syndrome isn't easy to hear, says Nelson, but the lessons that you learn as the child grows are invaluable.

"As I watch her grow, I think back on her life and what she has taught so many of us," she says, noting that her daughter never gives up or backs down to challenges.

"When Charity was born, I had no idea she was going to have Down syndrome. Being a young mom hearing there was something different with your child is a horrible and frightening experience," she says.

Fortunately, Nelson's physician and Charity's pediatrician offered words of encouragement after the Down syndrome diagnosis.

"(They) reassured me that, even though there will be challenges in her life, she is a gift," Nelson says. "Those words helped me with the trials we have gone through.

Charity had open heart surgery as a baby but to look at her today you would never know. I want people to know that Down syndrome is nothing more than being born with one extra chromosome. I like to say she was just born extra special."

Schaublin was 20 years old when Madison was born and says pre-birth tests said the baby did not have Down syndrome.

"So when she was born, I was in complete shock. I remember being scared, sad, angry. I had so many emotions. I was scared for her. I know how cruel people can be, and I only wanted people to accept my daughter for who she is, not something that she has."

Even with the advances in medicine and the potential for a normal life for a child with Down syndrome, it's not unusual for their parents to, at first, feel isolated, Milburn explains.

"You think, 'Will my life be different from everyone around me because of this unexpected curve ball?' Events like the Buddy Walk show families you are not alone," she says. "But, most importantly, life is the same in all the ways that matter most. Your child is loved, celebrated and fought for every day."

Siskin's Brandt advises parents to get involved in a support system.

"There are an ever-increasing number of valuable resources and supports for your family. Getting involved with programs like the Buddy Walk will draw you into a network of people with a broad knowledge of local resources. Their experience will help you celebrate the new additional to your family for the joy it is," Brandt says.

Do not put limitations on children with Down syndrome, Schaublin says.

"Accept them and love them for who they are. Don't feel sorry for them or their parents. Encourage them. That is all that the parents want and that is all our children want," she says.

Schaublin says her daughter "has taught me more about life and how to live it than I have for her."

"She does not meet strangers and is willing to talk to anyone and everyone. ... She doesn't judge. She loves everyone and accepts everyone. If we could learn how to treat others the way our children treat them, this world would be a much better place."

Contact staff writer Karen Nazor Hill at 423-757-6396 or khill@timesfreepress.com.