Christina and Justin Schye already had three children when their son, Kellan, was born last year.
They didn’t know until he was born that he had Down syndrome, and suddenly all the challenges of being a parent were magnified many times over.
“It was overwhelming — not knowing where to go or who to get help from,” Christina Schye said.
Schye is a registered nurse, which made her realize how tough it must be for other parents of children with Down syndrome.
“I felt sorry for the people who didn’t know what I knew, and I didn’t know much,” she said.
That’s why she recently helped start a group called YES Kids, and why she is helping to organize the first-ever Buddy Walk at Dehler Park on Oct. 2.
October is Down Syndrome Awareness Month, and the Buddy Walk is intended to raise awareness and build support for families whose loved ones have Down syndrome and other genetic disorders.
The first Buddy Walk was organized by the National Down Syndrome Society in 1995. This year, more than 300 such walks are scheduled around the country. More than 250,000 people took part in Buddy Walks last year, raising more than $9.5 million for the society and local organizations like YES Kids.
Mostly, Schye said, YES Kids is a support group. There used to be one in Billings, Schye said, but it gradually disbanded. YES Kids would like to connect with former members of that support group, so parents of older children with Down syndrome can share their experiences with younger parents.
Down syndrome is a genetic, chromosomal disorder. People with the syndrome are sometimes called “Xtra Special” because of the extra chromosome associated with the most common form of the disorder.
People with Down syndrome can learn to take care of themselves and lead fulfilling lives, but early therapy and medical intervention are important because of common health problems, including heart defects, respiratory and hearing problems and thyroid conditions.
YES Kids hopes to gain nonprofit status in order to offer financial help for families with extraordinary medical or travel expenses.
Schye said half the children born with Down syndrome will have problems requiring open-heart surgery in the first month of life, necessitating out-of-state travel and lengthy hotel stays. Families also need the services of physical therapists, genetic counselors and other specialists, she said.
Her son, Kellan, has needed help with breastfeeding and building muscle tone and he starts speech therapy next month.
“Without therapy, I can’t imagine where we’d be,” she said.
Another member of YES Kids is Michael Ray, a financial services associate with Prudential. He and his wife, Alyssa, have a son, Xavier, who is nearly 2 and has Down syndrome.
Ray said he is fortunate because Prudential has long recognized that parents with special-needs children have to have a particular kind of financial planning, which Ray now specializes in.
Ray said they didn’t know what to expect when they began organizing the first Buddy Walk, but as of the second week of September they already had 200 people registered.
“It’s going to be a lot bigger than I think we anticipated,” he said.
The Buddy Walk will involve three laps around the Dehler Park concourse, roughly a mile. Registration is $10. But people who just want to show their support don’t have to register and they don’t have to take part in the walk.
For Schye, it will be enough to increase awareness in Billings and Eastern Montana.
“We want people to know that these kids are here in our community and to accept them like any other child,” she said. She also said that YES Kids is for families whose members have other chromosomal abnormalities or any special needs and have nowhere else to turn.
Some businesses have already made donations to YES Kids, and people taking part in the Buddy Walk are encouraged to round up pledges. Ninety-three percent of the funds raised will support local families through YES Kids, with the other 7 percent going to the National Buddy Walk program and the National Down Syndrome Society.
One reason Schye chose Oct. 2 for the Billings Buddy Walk is that Kellan will celebrate his first birthday on that date.
“He was a gift to me and this is my gift back to him,” she said.