By Guy Stilwell
Staff Writer
The sound of applause filled the air of the Whatley Center foyer as Alex Mack, 14, walked away from the podium grinning from ear to ear. Mack had just presented a picture that she took of her close friend Rachel Connor and then described in a short speech how much she admired her.
What made this moment really special is that Mack and Connor were both born with Trisomy 21, also known as Down Syndrome.
Alpha Mu Chi, Northeast’s chapter of Phi Theta Kappa (PTK), recently hosted the Tea 21 Party, an event designed to raise awareness concerning Down Syndrome. The family atmosphere of the evening, which included board games and tasty treats like homemade scones and a variety of teas, was designed to encourage those in attendance to interact and get to know one another.
What made the whole occasion even more noteworthy is that it grew out of Alpha Mu Chi’s decision to research the ethical and physical boundaries of medicine as their Honors Program topic.
In order to maintain their status as a five-star chapter, the organization is required to do research on a topic presented in the PTK headquarters Honors Program Guide.
The group’s interest and decision to choose Down Syndrome as their medical focus, however, came about for a much different reason. Two of the members have a very personal connection to Trisomy 21. Mary Smith’s 14-year-old son, Logan, and Elizabeth Griffin’s little sister were both born with Down Syndrome.
Smith said they came up with the idea for the Tea 21 Party when they discovered the lack of knowledge about Down Syndrome during their research for the project.
“We learned through our survey that hardly any of the students actually were aware of what Down Syndrome is and they couldn’t probably define it,” Smith said. “Most of them had never had any real interaction with someone who has Down Syndrome and over 90 percent of them were in favor of curing Down Syndrome and also encouraging their spouse to terminate a pregnancy if they were going to have a child with Down Syndrome.”
Smith said that the Tea 21 Party was designed to help people get beyond the stigma that is placed on those with Down Syndrome and to present speakers showing that people with Down Syndrome, which is caused by the development of an additional 21st chromosome at conception, can lead productive and beneficial lives.
“We wanted to help people see that there is life after a diagnosis of Trisomy 21 and to bring a human face to the name,” she said. “And, we wanted to advocate for all of the benefits that people with Down Syndrome contribute to society such as teaching compassion and patience and also not taking things for granted by looking through things from innocent eyes.
Smith said they also wanted to “show the lighter side and that it’s not the end of the world to have a child with Down Syndrome.”
Dr. Melissa Fulgham, Northeast PTK adviser, said the Tea 21 Party offered students the type of educational experience that they might not get elsewhere. “Events such as these are part of what college should be about – broadening one’s horizons, learning new things, expanding one’s outlook.”
Griffin, Alpha Mu Chi President, said that one of the main reasons that PTK sponsored the Tea 21 Party was “to remove the negative connotation that Down Syndrome has on a lot of people.”
She said that many perceive Down Syndrome as a disease that needs to be eradicated. Griffin said, however, that she has quite a different view of Down Syndrome. “In my opinion, it’s a gift,” she said. “It’s a beautiful thing.”
The Tea 21 Party was dedicated to heightening awareness of the pressing issues that Down Syndrome presents, while also giving those attending the event the chance to connect and learn from one another.
“The Tea Party was an attempt to raise awareness and acceptance of people with Down Syndrome by bringing together those who have Down Syndrome and those who have had no exposure to people with Down Syndrome,” Fulgham said. She added that she was pleased with the students’ efforts on behalf of Down Syndrome and the event that they put together. “It was wonderful to see such a warm, engaged crowd that evening,” she said.
Smith’s son, Logan, 14, endured 26 surgeries, 19 of which occurred in the same year. The teenager has struggled with a plethora of health issues, both related and unrelated to his condition, which have resulted in the numerous surgeries.
Smith said that amongst the challenges that she has faced in raising a child with Down Syndrome, the greatest have been people who underestimate his abilities and assume that Down Syndrome affects all who have it the exact same way. Smith said that Down Syndrome varies in degrees from mild to severe.
Logan’s level of mental retardation is categorized as mild to moderate, and he is fully capable of reading, writing, learning and living a productive life. Although some may see Logan’s lifelong disability as an inconvenience, to his mother it’s a blessing. “I will always have my baby with me,” she said with a smile. “I can still kiss him at 15 in front of his friends.”
The highlight of the Tea 21 Party was the main speaker, Rachel Connor. She gave a passionate and lighthearted speech about living productively with Down Syndrome. She explained that many adults, just like herself, are active in the workforce as well as participate often in volunteer work.
A slideshow played during the event highlighting examples of successful people living with Down Syndrome and companies that have hired them. Some of those included Garett Holeve, an MMA fighter with Down Syndrome, and Katie Hull from Longview who has Down Syndrome yet has had two bills in Congress passed and owns her own business and Verc Enterprises, which has a 20 percent Down Syndrome population in their workforce. Connor personally volunteers often at her church in Longview to help others. She also has worked with a Certified Public Accountant (CPA) and for a congressman. Connor said that adults with Down Syndrome have opportunities to be successful professionals in the work field of their choice.
“Others are simply uninformed about what we can do,” she said.
Joy Griffin, PTK President Elizabeth Griffin’s mother, was one of several family members with children who have Trisomy 21 who attended the Tea 21 Party. “It’s really encouraging to see people understand the uniqueness that individuals with Down Syndrome bring to the table,” Mrs. Griffin said. “It is important because there are so many misconceptions about what Down Syndrome is.”
The founder of The East Texas Down Syndrome Group, Lisha Mack, also spoke to the audience about her life as a mother of a child with Down Syndrome.
Mack, whose daughter, Alex spoke at the beginning of the event, is an advocate for individuals with Down Syndrome as well as families that have children with Trisomy 21.
The East Texas Down Syndrome Group is active with about 200 families involved. The group provides financial support to families with members that have the condition as well as emotional support as they need it.
Mack shared some of her personal experiences with her daughter and the joy her child has brought into her life. “There was a time when myself and my husband would’ve taken away that Down Syndrome,” she said.
Since the birth of her daughter, however, Mack said her perspective and appreciation for what those individuals can offer to the world has changed. “Our kids can reach people that others can’t,” said Mack. “There is such a beautiful uniqueness about them.”
To contact The East Texas Down Syndrome Group for more information log onto www.etdsg.org, call 903-740-3843 or email at etdsgdirector@gmail.com.