Hannah Claire Yandell is perfect.
She is the nearly 4-month-old daughter of
Jason and Britny Yandell, and one look into her daddy’s gleaming eyes will tell you how much she means to the couple. “ She’s the best thing that’s ever happened to us, ” Jason Yandell says, barely taking his glance away from his daughter. Yes, Hannah is perfect, her parents say, even through she was born with Down syndrome, a condition that causes learning disabilities as well as distinguishing physical characteristics. Hannah certainly isn’t the only such person in America with Down syndrome — far from it, in fact. It is estimated that 350, 000 people living in America have the condition, which was named for John Langdon Down, the English doctor who first characterized its traits. In fact, said Kathy Thompson, president of local support group Down Syndrome Connection of Northwest Arkansas, 17 children in Northwest Arkansas born between now and May 2006 have been diagnosed with Down syndrome. Yet the condition, which is a genetic birth defect, is still misunderstood. And so to help educate the public about Down syndrome, the support group Thompson leads will be one of about 200 nationwide that will host a Buddy Walk during October, the National Down Syndrome Awareness Month. This year’s Buddy Walk, the third for the local group, will take place Saturday at Tyson Park in Springdale. In addition to being a fundraiser, it’s objective is also to simply raise awareness about what Down syndrome is and what it is not.
Learning and loving Those were lessons Jason Yandell said he wished he knew prior to learning that his firstborn daughter would have Down syndrome. He didn’t know anything about it, he admits, and his first real exposure came after a standard pre-childbirth alpha-fetal protein test indicated his daughter might have Down. An ultrasound — one more advanced than what is normal — also pointed toward Down syndrome. An amniocentesis, a test that analyzes amniotic fluid, further indicated Hannah’s condition.
As the tests suggested, Hannah would indeed be born with Down syndrome, as are one in about 800 newborns. The condition is not a disease, but rather a genetic abnormality. Each Down syndrome patient, instead of having the standard 23 pairs of chromosomes, has an extra 21 st chromosome for a total of 47. The cause of the abnormality is not known, but it is known that the older the mother is, the higher her chances of having a baby with the condition. At 33, Britny Yandell fits that mold.
Prior to Hannah’s birth, Britny Yandell said she had some knowledge of Down syndrome through her job as a nurse. But she also said sometimes even medical professionals don’t get it right. Shortly after the battery of tests confirmed Hannah would have Down syndrome, a doctor suggested to the soon-to-be mother that she have an abortion. Hannah would never be a productive member of society, he told Britny Yandell.
To this day, that very notion is enough to bring Hannah’s mother into a combination of anger and bewilderment. Keeping Hannah and raising her to the best of their ability was the only option, the family agreed. There was never an alternative. And although Jason Yandell admits the diagnosis was difficult to deal with at first, he soon learned to move forward in the process that would allow his daughter to have a full, productive life.
“ You’re going to have some grief, but then you’re going to have to make up you mind and learn how to be a good parent, ” he said.
And so within weeks of the diagnosis, he began buying and reading books about the condition. In addition, Britny’s parents, Dorylyn and Bob Thomas, moved from the Austin, Texas, area to help support the family. “ It’s not the end of the world, ” Bob Thomas said. “ It’s the beginning. ” The other step the family took was to try to find local resources to assist in the child-rearing process. On the Internet, Dorylyn Thomas discovered the Down Syndrome Connection group, and within a few hours of making contact, the Yandells had access to dozens of local parents who had already gone through the same experiences the couple was just beginning.
Growing up Down There is much to learn
about how to take
care of a baby — or a person of any age, for that matter — with Down syndrome. Statistically, babies with Down syndrome are much more likely to have a heart defect than a non-Down baby. Hannah was born without a septum, a dividing wall between two chambers, in her heart. A surgery in mid-November at Arkansas Children’s Hospital in Little Rock is scheduled to fix the problem.
Many with Down syndrome also have hearing or vision problems. Thankfully, the Yandells said, Hannah does not seem to be among them.
Another common trait among those with Down syndrome is slowed development. Hannah will likely not walk when her peers are walking nor will she speak as soon. Her growth rate and ability to build muscle are also likely to be diminished. She will also likely carry the condition’s physical characteristics, including almond-shaped eyes and a single crease across the palms.
But no case of Down syndrome follows any sort of pattern. The effects vary from person to person. Most, however, do have various levels of learning disabilities.
Yet, the Yandells are hopeful that Hannah will lead an active, valuable life. In fact, the only doubt they have about her going to college will be which one: Jason Yandell went to the University of Arkansas, and his wife and her parents went to the University of Texas.
There is still plenty of growing up between now and then, and one of the family’s collective hopes is that Hannah can live in a world that accepts her. There was a message at the bottom of one of the support group’s e-mails that Bob Thomas has taken to heart, he said.
“ There is a cure for Down syndrome, ” he said. “ It’s acceptance. ”
Breaking the stigmas Acceptance of people
with the condition
is the primary focus of the National Down Syndrome Society’s annual Buddy Walk, said Jon Colman, the national group’s chief operating officer.
Approximately 85 percent of those with Down syndrome are currently unemployed, he said.
“ It is to a large extent a human rights issue, ” he said by phone from the group’s headquarters in New York City. “ If that employment statistic were applied to any other demographic, it wouldn’t be tolerated. ”
During a Buddy Walk, it is crucial that people like himself, those without an immediate family tie to Down syndrome, attend the event, he said.
His hope is that if a potential employer can see a person with Down in action — walking, talking and otherwise doing whatever someone without the condition would do — they will be much more likely to consider someone with Down syndrome when making their next hire.
“ They need the message of inclusion, and they need to know that someone with Down syndrome is highly capable, ” he said.
Like her national counterpart, Kathy Thompson says that seeing is believing when it comes to the abilities of someone with Down syndrome.
The group she leads hosts speakers, games, parties and more on a monthly basis. But the upcoming Buddy Walk is the group’s largest annual event. This year’s offering will include a mile-long walk that is open to the public and kids’ games, face painting and food. Most importantly, it gives an opportunity for the public to see those with Down syndrome — and how little they differ from anyone else.
“ People with Down syndrome, ” Thompson said, “ are more like you than different than you. ”
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