FHSU University Relations and Marketing
By Diane Gasper-O’Brien
HAYS, Kan. — Rather than running away from the challenge of raising a child with a disability, a Fort Hays State University student and his wife are running toward the goal of raising awareness for Down syndrome.
Chad Simon, a senior communication major from Atchison, and his wife, Leyda, are the parents of a 3-year-old daughter, Ashlynn, one of about 6,000 U.S. babies born with the genetic disorder in 2012. Approximately 400,000 Americans have Down syndrome, which causes developmental delays.
The Simons were living in North Carolina, where Chad was a staff sergeant in the U.S. Marine Corps, when Ashlynn was born in October 2012.
After getting to know other parents of Down syndrome children, the Simons ran across a race fundraiser for the charity Research Down Syndrome. Now, the couple has run several marathons together and is in the process of helping organize a support group for families affected by Down syndrome.
A meet-and-greet for the Northwest Kansas Down Syndrome Society is set for 3 p.m. Sunday, Oct. 25, at Seven Hills Park, located at the corner of 33rd and Hillcrest Streets in Hays. There is no charge to join the group, which plans to offer educational information, medical information, early intervention, estate planning, and family fun.
“We want this to be a support group for people where they can ask questions, talk to others who are going through the same thing,” Chad said.
The Simons have been particularly busy recently since October is Down syndrome awareness month. After participating in a “Buddy Walk,” an event geared toward individuals with Down syndrome and their families, the first weekend of the month in Clyde, the Simons ran in the Bank of America Chicago Marathon the next weekend.
Since running their first marathon two years ago, the Simons have raised more than $9,000 for LuMind Research Down Syndrome.
The experience has changed the lives of the Simon family, which includes Ashlynn’s three older brothers: Ashton, 11; Ethan, 7; and Ian, 5.
“The Buddy Walk was like a big family reunion,” Chad said. “It’s a celebration of life of Down syndrome family members.”
The Simons were living in Japan — where Chad was stationed at the time — when they learned Leyda was pregnant with their fourth child in the summer of 2012.
The pregnancy was a surprise — but a pleasant one — for the Simons, especially when they learned it was a girl. However, an ultrasound showed that there was a strong possibility their daughter had an extra copy of chromosome 21, the cause of the genetic disorder. Tests also detected that Ashlynn had a heart defect and would require surgery not long after her birth.
Although it was an emotional jolt, Chad said they accepted the news and began gathering information about Down syndrome.
“God was giving me a baby girl, and I accepted what he gave us,” Leyda said. “I started to get to know other moms with Down syndrome children.”
Ashlynn was born on Oct. 15, 2012, and she underwent open heart surgery when she was just 5 months old. That’s when the enormity of the situation hit Leyda.
“We accepted the Down syndrome,” she said. “But to have to see Ashlynn go through the heart surgery, too, that was so hard.”
Feeling overwhelmed one day right after Ashlynn’s surgery, Leyda went for a walk. The walk turned into a run, and Leyda said she suddenly felt free of any burdens. It was then that she realized she could run for a cause.
“I came home and told Chad, ‘I want to keep running,’ “she said. “I felt so good that when I wanted an out, I just went and ran.”
So the Simons decided to enter a 5K race, then started training for the Marine Corps Marathon scheduled right around the time of Ashlyn’s first birthday.
“We found out all the entries were full, but that we could still enter through the charities division,” Chad said. “So we looked for something we had a personal connection with.”
In searching for charities online, the Simons found RDS — Research Down Syndrome, which since has combined efforts with the LuMind Foundation to form Lumind RDS Foundation, the leading source of private funding for Down syndrome cognition research.
“I thought, ‘There you go,’ ” Chad said, and Team Ashlynn was born.
In addition to raising money through successive marathons, the Simons also are instrumental in starting the area support group.
Currently, more than a dozen families from the area are involved.
Chad still has several semesters of school remaining, and he is unsure where his family will end up after he graduates. One thing he is sure of, he would like to work for a non-profit organization.
In the meantime, the Simons are doing what they can in trying to get the area support group off on the right foot.
“My wife and I want to help others,” Chad said.
“We’ve been blessed with our daughter,” Leyda added. “We don’t want people to feel alone, to know that there are others out there going through the same thing.”