Bayers grateful for support for daughter with Down syndrome
Even before their now-nearly three-year-old twin girls were born, Mike and Cyndy Bayer of Hager City knew they'd be having a child with Down syndrome.
Doctors made them aware one of their newcomers would experience the condition, Mrs. Bayer said Thursday, indicating the babies were premature, born seven weeks early at a St. Paul hospital. So as soon as Adrienne could have therapy in response to the chromosomal disorder, her caregivers arranged it. The syndrome affects the body, lowering muscle tone and making it harder to walk, she said.
"Adrienne began walking not much later than her twin sister (Kayley)," their mother said, crediting Pierce County's Birth-to-Three program for being involved from the very start. "They came right to our home."
Early this month, which is Down Syndrome Awareness Month, the family celebrated the progress their child has made by participating in the 10th annual Buddy Walk in St. Paul, she said. They joined others from Down by the River, a chapter of the Down Syndrome Association of Minnesota, in a 1.6-mile walk they dedicated to Adrienne.
The walkers solicited pledges and raised almost $500 for the association, Mrs. Bayer said, noting their team numbered 35 members, but there were around 5,000 people present. Over four-and-a-half hours, they followed a route through Como Park, had opportunities to socialize and took advantage of the activities available for children. The weather was warm, yet comfortable.
"It was impressive to see the long line of walkers, all in their matching shirts," she said, referring to t-shirts participants could order when pre-registering.
Adrienne has been subjected to four hours of therapy a week, besides the exercises and activities her parents provide, her mom said. She's had difficulty with her heart, an intestinal problem requiring surgery the day after she was born, the need for tubes in her ears and trouble with her eyes. Nonetheless, she accompanies her twin and their 10-year-old sister, Madeline, for swimming, going to playgrounds, playing with dolls, bicycling, on family trips up north, boating and even to basketball games (following the lead of their mom, who was a guard on the girls' team while a student at Ellsworth High School).
"She's like the other kids," Mrs. Bayer said. For example, while initially there were lots of doctors' appointments, they're now scheduled just once a year, she explained.
The Bayers do have to watch out for their special youngster, however, she said. They must decide which toys to buy her and which activities are best for her, for instance, mindful of strengthening her motor skills.
"We've got to pay attention to her developmental issues," she said.
The couple, who met at the church both attended (Big River) and married in 1995, has become somewhat experts on the disorder, with outside assistance. Mrs. Bayer said she and husband Mike were directed to the association by the hospital and got involved with its chapter in River Falls not much more than six months after it was formed. The approximately 15-member group, which meets for an hour monthly at Have-A-Heart Farm, hears from speakers and representatives of church and youth organizations. It's comprised of parents from this vicinity whose children range in age from younger than Adrienne to school students.
"After Adrienne is three, the local schools will take over and she'll be evaluated for their early childhood program," Mrs. Bayer said of an expected transition from the county.
Meantime, a special children's center in Hudson has been a valuable resource for her and her spouse, she said. And the association gave them a scholarship to attend a national gathering in Kansas City this summer, a three-day conference where specialists offered the latest updates about research in the field.
Information from the association shared by Mrs. Bayer indicates all people with Down Syndrome have an extra, critical portion of their number 21 chromosome present in all or some of their cells. This additional genetic material alters the course of development and causes the characteristics associated with the syndrome. It's one of the leading clinical causes of intellectual disabilities in the world.
People with Down syndrome are at higher risk for medical problems and language delays, the information states. Early intervention, high quality educational programs, a stimulating home environment and good medical care enable people with Down syndrome to become active and contributing members of their families and their communities.
"It is the mission of the Down Syndrome Association of Minnesota to provide information, resources and support to individuals with Down syndrome, their families and their communities," it states.
The association's programs and services include: Down Comforter information packets, new parent breakfasts, grandparent information packets, teacher resource packets, parent-to-parent visitations, parent support groups, a bi-monthly newsletter, another newsletter written by and for people with Down syndrome, another newsletter for educators, a resource lending library, social activities throughout the year, regional conferences every other year, annual conferences for youths and adults with Down syndrome, annual conferences for grandparents, resource and referral information, and a web site with bulletin board at .
For more information or to support the association, visit or call 1-800-511-3696. Donations made to the association are tax-deductible.
Cause, prevention unknown
Among facts about Down syndrome from the association are:
--The incidence of Down syndrome in the U.S. is estimated to be one in every 733 live births (about 4,000 individuals each year) affecting approximately one-quarter million families.
--The exact cause and prevention of Down syndrome are currently unknown.
--Down syndrome occurs at the moment of conception.
--While the likelihood of giving birth to a child with Down syndrome increases with maternal age, nevertheless, 80 percent of babies with Down syndrome are born to women under 35 years of age, as women in that age group give birth to more babies overall.
--There is wide variation in mental abilities, behavior and physical development in individuals with Down syndrome. Each individual has his/her own unique personality, capabilities and talents.
--Thirty-to-50 percent of the individuals with Down syndrome have heart defects and eight-to-12 percent have gastrointestinal tract abnormalities present at birth. Most of these defects are now correctable by surgery.