World Down Syndrome Day: Locals rallying for bill
Editor’s note: World Down Syndrome Day is March 21, a symbolic date for Trisomy 21, commonly known as Down syndrome.
When Peggy Ann Bailey discovered the baby she was carrying likely had Down syndrome, the doctors presented her with two options: She could choose to give birth to the child or have an abortion.
Peggy and her husband, Donald, decided to keep the child.
On Jan. 24, 1969, Peggy gave birth to a baby girl named Becky at Altoona Hospital, now UPMC Altoona.
“I know the first time they found out — and we’re an old-fashioned family and they were in their 40s when they had her — they didn’t even think twice about it,” Vickie Douglass, Becky’s older cousin, said.
On March 12, advocates and Pennsylvania lawmakers rallied in Harrisburg to urge the passage of proposed legislation that would ban the abortion of children due to a prenatal diagnosis of possible Down syndrome.
At birth, Becky suffered from respiratory issues and a congenital heart disease known as VSD or ventricular septal defect, a condition common with Down syndrome. According to the American Heart Association, VSD occurs when there is a hole in the wall that divides the two lower chambers of the heart.
In June 1971, Becky underwent open heart surgery at a hospital in Pittsburgh.
Down syndrome, also known as Trisomy 21, derives from the presence of part or an entire third copy of chromosome 21. While most people have 46 pairs of chromosomes, individuals with Down syndrome have 47 pairs.
John Langdon Down, an English physician who published a description of the condition in the late 19th century, is recognized as the “father” of the syndrome.
The Centers for Disease Control and Prevention estimates that one in every 700 babies in the United States is born with Down syndrome — an estimated 6,000 babies each year.
While some studies suggest that 90 percent of babies prenatally diagnosed with Down syndrome are aborted, the Charlotte Lozier Institute said there is no such data collection and “little chance that this level of data collection will ever be possible.”
House Speaker Mike Turzai, R-Allegheny County, and state Rep. Judy Ward, R-Hollidaysburg, introduced House Bill 2050 in early February. The bill was sent to the House appropriations committee March 14.
“All life matters. Every life matters,” Ward said of the bill. “These individuals are a joy to their families and an inspiration to those around them.”
While the bill has garnered some support, a Hollidaysburg resident who has a 40-year-old son with a genetic disability offered a challenging argument to the proposed legislation at a public discussion that Ward hosted on March 7 in Bellwood.
“You do not know when there is something wrong in the womb. You do not know how severe it’s going to be,” Frances Hugg said. “Because you don’t know, that’s the terrible thing. Also, our attitude about having universal health care, who’s going to care for these children after their parents are gone?
“I’ve done everything I can for him, but what’s going to happen when I’m gone?” Hugg asked. “I never would’ve had an abortion myself. I don’t believe in abortion, personally. But I think before you lay this on someone, you have to have walked in their shoes.”
But according to Jamie Henry, executive director of the Southern Alleghenies Service Management Group, “There are supports for all aspects of a person’s life.
“There are more resources today for folks with developmental disabilities and with Down syndrome that can help them be contributing community members,” he said.
At the beginning of January, the SASMG added three more support coordinator organizations for Blair County: Service Access Management, Family Links and Center for Community Resources.
Prior to the additions, SASMG only had one support coordinator organization, North Star, to connect families who have a member with a disability to resources. Referrals for early intervention resources are still funneled through North Star.
“It’s our responsibility to provide choice to all families,” Henry said. Through the SASMG, there are currently 26 provider agencies for adults with disabilities and nine early intervention service providers throughout the county.
John Seely, co-founder of the Empowering Lives Foundation, started the Altoona-based organization aimed at assisting people with disabilities through social experiences and customized meaningful employment with his wife in October 2015.
His 19-year-old son, Nick, who has Down syndrome, inspired them to establish the organization.
“There is a point where you realize that your child is going to have a harder and a different life path. But you still need to treat them like any other kid,” Seely said. “You need to push them to do the best they can and go beyond what they think they can do. And with a child with Down syndrome, you should have the same expectations for them. I think that’s part of the changing philosophy.”
“We need to change community mindsets. We need to change parents into inspiring and believing that all their children can be successful in life and have a meaningful life,” Seely said. “We need to convince communities that anyone can work, that anyone can have a purpose and value to their community and that anyone can live in their community.”
Maria Brandt, executive director of The Arc of Blair County, has worked with people with disabilities through The Arc since 2005.
“There are moments in every life we draw inspiration from and that we have the ‘aha’ moments of this is their purpose in life,” Brandt said. “If we constantly live in a perfect world, how are we ever going to have empathy? How are we, as human beings, if we are not allowed to engage, going to ever have any sense of compassion?”
“I’ve heard more positive from parents who have lived a life with a child with a disability than I do negative. Most of the time, I hear how it transformed their viewpoints and transformed their lives for the positive,” she said.
Instead of placing Becky in a state institution, Peggy and Donald wanted to raise their daughter in their own home. For years, Becky and her family lived at 215 Wall St. in Hollidaysburg.
Although she lived in Hollidaysburg, Becky attended and graduated from Altoona Area High School and worked at Giant Eagle for 25 years.
Becky’s cousin, Vickie Douglass, became Becky’s legal guardian in 2013 after Becky’s mother and father both died from health complications.
Becky, now a 49-year-old resident of Altoona, bags groceries part time at Weis Market three days a week. She enjoys bowling, shopping, square dancing at The Arc and visiting Canoe Creek State Park. Becky lives in a community home with two housemates.
“They can live on their own. They can have their own support staff going in,” Douglass said. “We’ve come a long way … figuring out what they like and building their life around that. That’s come a long way.”