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Doctor to take part in Down syndrome buddy walk
By Justin Goble
A local family will be taking part in events aimed at raising awareness about Down syndrome in the region.
Sylva pediatrician Carmen Nations and her daughter Evan will participate in the Western North Carolina Down Syndrome Alliance’s 11th-annual Buddy Walk this Saturday, Oct. 11. The event will be at North Henderson High School.
Nations, who serves as one of the WNC Down Syndrome Alliance’s board members, said the event is a good way for those in attendance to better understand people with Down syndrome while creating a community of “buddies.”
“It’s a great event,” Nations said. “Our main goal is exposure – we want people to see that kids with Down syndrome are just as outgoing and just as fun as everyone else. Our mentality is that we just want people to come and hang out with kids who have Down syndrome. Hopefully they’ll see that they’re more alike than different. While we want people to know that we’re here for things like support, we also have lots of fun as well. There’s going to be singing, dancing and a talent show.”
Carmen Nations and her 3-year-old daughter Evan will be taking part in the Western North Carolina Down Syndrome’s 11th-annual Buddy Walk on Saturday, Oct. 11, at North Henderson High School. Nations, who serves on the WNC Down Syndrome Alliance board, said she and her family found out Evan had the condition soon after she was born in September 2005. However, with support from family, friends and the community, Nations said she expects her daughter to grow up leading a normal, healthy life.
A smaller “buddy walk” has been scheduled for Fairview School on Wednesday, Oct. 22.
Down syndrome is an issue very close to Nations’ heart. After her daughter Evan was born with the condition in September 2005, she got involved with the WNC Down Syndrome Alliance in an effort to spread awareness about it.
“As a pediatrician, I knew about Down syndrome – I knew the spectrum of how it can affect people and the resources that are out there to help,” Nations said. “But the biggest motive was for Evan. I really just want for her what every parent wants for their children. I just want her to be accepted and loved. I want to help her reach her potential and want to surround her with people who want to help her do that.”
However, Nations said that she was frightened after she found out that her daughter had been diagnosed with Down syndrome. She and her husband Clay heard the diagnosis soon after Evan was born.
“I think I was at a disadvantage of having too much information,” Nations said. “New parents can get all of the information they need, but it usually just trickles in. But I knew the entire spectrum of how kids can be affected by Down syndrome from the get-go. So when they told me Evan had Down syndrome, I assumed the worst.”
Nations explained that kids who are mildly affected grow up to lead normal lives – they play sports, go to college and have kids of their own. Those with severe cases usually need constant attention. While Evan is in the former category, Nations said she was initially upset about her daughter’s condition.
“There was a bit of grieving,” Nations said. “Like many parents, I had expectations for the ‘perfect baby’ that would grow up to be smart and athletic. But I got to a point where I realized that she will do that. She’ll be able to do whatever she wants.
“It took me a while to get to that point, though,” she said. “I’ve never wanted to change a thing about Evan, but I definitely went through the five stages of coping that people talk about – denial, anger, bargaining, depression and acceptance. Really, I’ve come to see it as a blessing. She’s a happy, loving, smiling child, as most kids with Down syndrome are. She brings that out in others as well. Every time we leave a restaurant she’s got everyone waving goodbye to her. I know that she’s going to be able to do anything she wants to. There are unlimited possibilities for her.”
As for the rest of the family, Nations said they have been supportive of Evan from day one.
“The whole time my husband Clay has been her biggest fan,” she said. “Her two stepsisters, Maggie and Caroline, have been great as well. Evan has learned so much from them. They’ve taught her more than I ever could have imagined.”
Working with the WNC Down Syndrome Alliance, Nations said her goal is to help other parents who have children with the condition. Along with offering money for children to take part in enrichment programs, the Alliance is working to get information out to parents.
“We’ve been making information packets that are really helpful,” she said. “There’s a support group that’s offered at the hospital that we sponsor. That’s great because it allows people who are in different stages of dealing with things to meet and talk. You find that people with older kids have been through it all, and they have a lot of great advice.”
Nations said there are more options for parents now than there ever has been. Letting them know the services available has been another goal for the WNC Down Syndrome Alliance, she said.
“Not that long ago, families who had kids with Down syndrome put those children into homes,” she said. “But that’s changing. With Evan, we started physical therapy while she was in the Neonatal Intensive Care Unit. That was a big help, and it’s something that people can do.
“Parents can also get prenatal testing to see if their child may suffer from Down syndrome,” she said. “If a child was diagnosed with Down syndrome in the womb, the doctor usually offered parents information on how to get an abortion. However, new legislation requires doctors to offer information about support that’s out there for them as well.”
Though there are a lot of preconceptions about children with Down syndrome, Nations said a lot of parents are finding out their children can lead happy lives.
“I heard a father speak about it one time at the National Down Syndrome Congress,” she said. “He talked about a ‘curve of enlightenment.’ It’s a journey. You start out asking why, thinking how terrible this is. But in the end, most parents of kids with Down syndrome feel lucky. With Evan, we’ve learned about unconditional love and acceptance. We are acutely aware of the hopes and dreams and struggles of life. And every small achievement or developmental milestone is a cause for celebration. Sometimes knowing and loving someone who has Down syndrome can make life seem more difficult but most often it enlightens us to how vivid, precious and beautiful life can be.”
For more information about Down syndrome, visit the National Down Syndrome Society site at www.ndss.org or the National Down Syndrome Congress site at www.ncdsccenter.org
For more information about the buddy walks or the services offered by the WNC Down Syndrome Alliance, visit www.wcdsa.org.
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