In May 2020, Danielle Pile Grandholm ’10 and her husband, Matt, welcomed their second child, a daughter named Sammie, into the world. When Danielle first saw her baby, she thought Sammie looked different than she expected. Doctors confirmed Danielle’s suspicion— Sammie has Down syndrome.
In those first days in the hospital, Sammie was doing well for a newborn, but her parents had a lot to catch up on. The unexpected diagnosis was difficult to wrap their minds around. Sammie also had a congenital heart defect that caused three holes in her heart. And they learned about other possible health concerns that come with a Down syndrome diagnosis, like hearing loss, vision issues, and feeding concerns. After 48 hours in the hospital, they were discharged with a Google printout of what Down syndrome is.
“My husband and I are white, upper middle class, well-educated individuals. We have communities of support. We have resources,” Danielle said. “And we still felt lost when our daughter was born. Can you imagine if you didn’t have the resources to navigate those questions and fears? Can you imagine if you had no support system?”
These questions kept coming to mind, and the Grandholms decided to act. They started a nonprofit called Rising Kites. The organization is funded in part from sales of cut flowers from a garden that Danielle planted while she was pregnant with Sammie.
The mission of Rising Kites is to provide hospitals, birthing centers, and prenatal clinics with resources for parents who have just learned their child has a diagnosis of Down syndrome.
Rising Kites bags have educational resources, gifts, and items to encourage families that are new to the Down syndrome community. “We want to make sure that families in the Down syndrome community get more support right from the beginning—so they don’t have so much fear. So they feel a sense of community. So they know they aren’t alone. So they might actually see what a gift their child is,” said Danielle.
Danielle, who studied speech pathology and works as a speech therapist part time, says that her Calvin education has equipped her to advocate and care for her daughter. “Whether it be knowing what services she is entitled to, or knowing how to work as a team with therapists and doctors, or, most importantly, knowing how to express to others that her life—despite any disability—has as much value as yours and mine as she is a human made in the image of God— I just don’t believe I would have been as well equipped to know how to address or express these things without my education.”
To find out more about Rising Kites, visit risingkites.org.