Like many mothers, Robin Simmons had some anxiety when her youngest daughter, Lily, started kindergarten in September.
She said, however, it was a little different this time.
“I was more nervous for her,” she said. “I wanted to make sure she had that feeling of belonging.”
Lily, who turned five in June, was born with Down syndrome.
According to the National Down Syndrome Society website, Down syndrome occurs when “an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.”
The website also states Down syndrome is the most commonly occurring chromosomal condition, with one in every 691 babies in the United States born with the condition and more than 400,000 people living with Down syndrome across the country.
Lily was born June 1, 2008, at Bassett Healthcare in Cooperstown. Robin Simmons said it was right after she was born the family learned of Lily's condition, which she described as a surreal experience.
“It was like being a in a bubble,” she said. “I was floating over everything. It didn't seem real.”
Simmons' husband and Lily's father, Bob Simmons, said he was “scared” and “nervous” when he learned of Lily's condition. He said he remembered asking, “How were people going to treat her?”
Robin Simmons said she remembered their oldest daughter, Willow, who was 14 at the time, wondering how Lily will be able to socialize with her peers.
“She said she was afraid she wouldn't be able to go to dances … to be able to do that sort of thing,” she said.
Robin Simmons said there was a woman on the hospital staff who had a child with Down syndrome and came and talked to her about it. She said she soon learned of the Mohawk Valley Down Syndrome Awareness Group and became involved with them.
The Simmons family will participate in the Upstate Cerebral Palsy Buddy Walk for Down Syndrome Awareness, which they have done every year since Lily was born. The walk will take place on Sunday, Oct. 6, at Hanna Park in Utica, with registration at 10 a.m. and the walk beginning at 11 a.m.
According to information provided by Buddy Walk organizers, the group Simmons participates in “was formed by Upstate Cerebral Palsy to offer a forum for area families to share strategies for success and to learn from each other as they face the challenges of Down syndrome. The group meets monthly and has open discussions and also invites professionals to speak on topics requested by group members.”
The goal of the awareness group and of the Buddy Walk is to promote acceptance, awareness and inclusion of all people with Down syndrome, according to Buddy Walk organizers.
Page 2 of 3 - Lily will be among the 15 or so Simmons family members who will participate on Sunday. Also walking with her will be her four sisters - Willow, 18; Rose, 14; Sophia, 12; and Skye, 9.
The family printed T-shirts for this year's event, with a ribbon design on the back with the words “Keep calm. It's just an extra chromosome.”
“It's hard because you have a lot of different walks where they are looking for a cure, whereas with this, you're never going to get rid of Down syndrome. This is more about awareness and accepting it's going to be there,” said Robin Simmons.
According to information provided by Buddy Walk organizers, “little is known about this [genetic] change, but it is a fact that children with Down syndrome benefit from the same care, attention and inclusion in community life from which all children learn.”
Among some of the misconceptions people have about Down syndrome, according to the National Down Syndrome Society website, is that people with Down syndrome have severe cognitive delays.
The website states, “Most people with Down syndrome have cognitive delays that are mild to moderate. Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.”
Robin Simmons said Lily's condition has led to other health problems, including a congenital heart defect. At nine months old, Lily had open-heart surgery to correct the defect. Simmons said Lily also had pneumonia and other health issues associated with her condition.
Despite her medical conditions, Lily has been able to overcome them to lead an active lifestyle. Lily plays AYSO soccer and just started with the 4-H Clover Bud club.
Over the summer, Lily earned fourth-place in the Herkimer County Fair beauty pageant. Robin Simmons said Lily's platform in the pageant was to raise awareness for Down syndrome, but it was also to help Lily to get her to speak more to others and in front of crowds since she has a speech development delay.
When asked what she likes to do for fun, Lily responded, but had the help of her sister who was able to clarify what she said.
“I like to play with Skye,” said Skye, for her sister.
Then Lily named her father and sisters as others she likes to play with.
Her mother also helped clarify what she said she likes about her school, which included the playground and her teachers.
Besides being in her regular classroom at school, Lily also sees a special education teacher, a speech therapist and an occupational therapist. Simmons said nearly a month after Lily started at Frankfort-Schuyler Elementary School, things have been going well and that her classmates are very accepting of her.
Page 3 of 3 - “The kids are absolutely wonderful,” said Bob Simmons.
Robin Simmons added, “Kids don't see the differences that adults do.”
During a recent visit to the home, Lily put a blanket on her head to pretend she was a ghost, kicked a ball around with her sister Skye and was eager to see how her photos looked after having them taken by a photographer.
“She's typical to all the other kids. She laughs when she's happy and she cries when she's sad,” said Robin Simmons.
The Buddy Walk is a mile long. There is no fee, but donations are accepted.
Those interested in contacting the support group may call Colleen Orsino, Medicaid service coordinator at Upstate Cerebral Palsy, at 738-0794, ext. 247.
For more information about Down syndrome, go to http://www.ndss.org.