PULLMAN – I sat at the kitchen table making small talk with Scotty Cornelius while his daughter, Kenyon Cornelius, finished her shower. She had just returned from a two-hour workout with the WSU masters swimming group. When she emerged — light-brown hair fluffy and dry — she cheerfully took us on a tour of her apartment.
As we walked from the art table to the perfectly organized closet to her tidy computer desk and well-stocked kitchen, Kenyon kept up a running patter about her day-to-day life.
“I’m pretty proud of her,” said her father, a scientific laboratory manager in the School of Earth and Environmental Sciences. “Kenyon leads a remarkably full and diverse life. She does a very good job living independently: she gets to work on time, swims three times a week, goes to church, reads at night … ”
Kenyon, who has Down syndrome, is a food service worker at the WSU Delta Delta Delta sorority house. She is among a number of individuals with Down syndrome who work at WSU.
Terry Hassold, director of the Center for Reproductive Biology and Eastlick Distinguished Professor in the School of Molecular Biosciences, has been a longtime advocate and researcher in the Down syndrome arena. As a member of the scientific advisory board for the National Down Syndrome Society, he has spent more than 30 years working to identify the underlying causes of the chromosome abnormality behind the disorder.
Down syndrome (DS) — a condition associated with an extra chromosome and scientifically known as trisomy 21 — first was associated with pregnancies in older women in 1933. By the 1990s, laboratories were using DNA fingerprinting techniques to help identify chromosome abnormalities in eggs and sperm. Today Hassold and his colleagues are taking it one step further with immunofluorescent antibody studies.
Beyond asking how the extra chromosome gets there in the first place, the team hopes to address aspects much more important to parents — namely what can be done to improve the physical or intellectual problems associated with DS?
“This has been an extraordinarily difficult nut to crack,” said Hassold, “in part because we’re not just dealing with a mutation in a single gene — as for cystic fibrosis or sickle cell anemia — but with increased dosage (number of copies of a gene in a cell) for all of the 200-400 genes located on chromosome 21.”
Recent studies at other laboratories, however, have begun to bear fruit.
“We now know the identity of genes for DS-associated cases of leukemia and heart disease — and are beginning to understand some of the differences between the neural networks of trisomic and chromosomally normal individuals,” Hassold said.
“Undoubtedly, answers will take a long time, but after years of making little, if any, progress on this front, investigators are increasingly optimistic that they will be able to develop strategies to improve the lives of individuals with DS,” he said.
For her part, Kenyon would be happy to find a job with a few more hours. Through the help of Palouse Industries in Pullman, she previously held a job in the WSU greenhouses and wouldn’t mind going back there again.
“It was good. I like it a lot there — to work with the people there,” she said.
To learn more, see ONLINE @ www.ndss.org and the WSU Disability Resource Center ONLINE @ www.drc.wsu.edu.
Congressional bill passed
In October, the Prenatally and Postnatally Diagnosed Conditions Awareness Act was signed into law by U.S. President George W. Bush.
The bill requires that parents whose children (before birth up to one year of age) receive a diagnosis of Down syndrome or other conditions (spina bifida, cystic fibrosis and dwarfism, etc.) be provided with the latest information on the condition and be informed of support services available.
It also establishes a registry of families willing to adopt special needs children.
The bill is meant to offset the fact that many doctors have been unaware of the benefits that early intervention and a combination of therapies can provide.