CHICAGO — In the multiracial Nussbaum household on Chicago’s North Side, parents Eli, 45, and Amy, 41, are teaching their four children – two biological sons and two adopted daughters – that siblings don’t have to look alike to be family, and that their similarities outweigh their differences.
“We wanted to have a multiracial family because we wanted to have inclusion, we thought, you can’t dislike somebody or something if it’s a family member,” Eli Nussbaum said.
At the center of the family is Libi, a 4-year-old girl who lives with Williams syndrome.
“She is a true joy to be around, because she’s just always happy to see you,” Amy Nussbaum said.
Williams syndrome, named after Dr. J. C. P. Williams, the cardiologist who discovered the condition, is a rare genetic accident in which genetic material is deleted, often resulting in a difficulty with visual-spatial tasks such as drawing and assembling puzzles, but a high aptitude for spoken language and music.
“We knew pretty early on that there was something that was different about her, but we didn’t know why or how,” Eli Nussbaum said.
Libi, which means “my heart” in Hebrew, has already endured a lifetime of medical challenges. Before the age of 2, she had already had two heart procedures and was diagnosed with hydrocephalus, a condition which causes fluid to build in the brain, sometimes enlarging the head and causing brain damage. She now has a brain shunt to help drain the fluid.
When one doctor commented that Libi’s cerebellum looked enlarged, Amy Nussbaum did some research and found that it is a common trait associated with both autism and Williams syndrome.
“Because it’s so rare – it’s only 1 in 10,000 people – most people don’t know about it,” Amy Nussbaum said. “I found the Williams Syndrome Association web page and it was like seeing our daughter on a web page, because so often times they have common and similar facial features.”
The Nussbaums say they’ve had several challenges dealing with insurance, educational, and caretaking and roadblocks.
“All of the systems around her are not built for her,” Amy Nussbaum said. “It’s a struggle to get people to understand to make accommodations, to get people and systems to pay for her needs.”
That’s why the Nussbaums are trying to raise awareness about the condition.
They recently held a block party in Chicago’s Lakeview neighborhood and invited the neighborhood kids, parents, and others with Williams syndrome to mingle and share a good time.
“If you’re not around disability, it seems so foreign to you. And some people are uncomfortable around it,” Amy Nussbaum said. “And this was just an opportunity to offer typical people an opportunity to be around a disabled child and other disabled people and find out that it’s fun and welcoming and enjoyable.”
The biennial Williams Syndrome National Convention is coming to the Chicago area this year. It will take place Tuesday July 12 through Saturday, July 16. More information on attendance and donations can be found here: