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Thad Allton/AP Photo

Jo Eisele, right, a graduate student from Kansas State University, works with Grace Martinez on her speech and language skills in December in Topeka. Grace, who has Down syndrome, is “really blossoming” in her speech, physical and occupational therapies, says her father, Richard Martinez.

Topeka — Grace Martinez — soon to be 7 on Dec. 30 — likes to tell her parents about her friends at school and displays her sense of humor and compassion when it’s most needed.

“When I’ve had a rough, hard day, Grace gives me a hug when I get home and it always goes away,” her father, Richard Martinez, said.

When Grace was born, her parents didn’t know how much their daughter would be able to communicate with them or how her motor skills might develop. Grace has Down syndrome, which means an extra portion of the No. 21 chromosome present in all, or some, of her cells.

Down syndrome, the most commonly occurring genetic condition, results in a wide range of abilities, physical development and behavior. One in every 800 to 1,000 live births will result in a child with Down syndrome. About 350,000 people with Down syndrome live in the United States.

Dealing with surprises

“Although it was a surprise, it wasn’t a catastrophe,” her mother, Anne Martinez, said of Grace’s diagnosis.

Anne, a neonatal nurse, said children with Down syndrome often have health concerns early on, and Grace was no exception. She had a minor heart condition, which resolved on its own; the bones in her neck were unstable; and she had trouble gaining weight.

“But it really didn’t feel that much different parenting Grace,” her mother said.

Newborns with Down syndrome need to be assessed to see if their heart echoes are normal because 60 percent or more of those children have cardiac issues that need to be repaired by surgery, she said. Children with Down syndrome may experience intestinal blockages, restless sleep and respiratory problems.

“It’s common for them to have thyroid problems and have to take medicines by the time they are adults,” she said.

Grace, like many children with Down syndrome, has poor muscle tone, but that condition won’t worsen as she gets older. With therapy, her muscles will grow stronger.

Therapy begins

About two weeks after Grace was born, her parents enrolled her in the infant-toddler program at TARC Inc., a Topeka agency that provides services to those with developmental and related disabilities and their families. She has received speech, physical and occupational therapies from the agency.

Grace attended the special education preschool at Randolph Elementary and now is in the special education kindergarten class at Linn Elementary. Next year, Grace will be part of a regular first-grade class at Randolph, where she will continue to receive speech, physical and occupational therapies.

“She’s really blossoming,” her father said, who now serves as president of the TARC board of directors. He noted she is learning to read and developing social skills.

Anne said Grace’s differences in abilities often become the focus when she’s in an educational setting.

“But at home she’s our Gracie girl,” her mother said. “It’s a part of her, but not the most important part of her.”

The Martinezes have three other children — Lauri, 14, an eighth-grader at Most Pure Heart of Mary; Lisa, 19, a freshman at the University of St. Mary in Leavenworth; and Anthony, 22, a senior at Benedictine College in Atchison.

Lauri said having Grace as a sister has changed the way she thinks about people with disabilities. “It’s more positive,” she said.

When Grace was younger, she was able to use sign language to express her needs and communicate with family members.

“I took a sign language class in sixth grade, and I might not have if not for Grace,” Lauri said, adding that she, her mother and older sister took a sign language class together.

Lauri has done radio spots and appeared on television to help raise funds for TARC. Grace and her father are appearing this holiday season in a TV commercial for Winter Wonderland, a holiday light show at Lake Shawnee that benefits TARC.

‘One day at a time’

When Grace was a baby, Richard and Anne said they worried about their daughter’s future and what would happen to her if they were no longer around. With the help of a financial planner, the Martinezes have set up a trust for Grace.

“You take it one day at a time,” Richard said. “Why worry about 20 years when today’s going great.”

“I worried about Grace when she was first born, but she’s a go-getter,” Anne said. “I see her being very independent.”