Sitting in her special chair, four-year-old Reem Nouri played with a brightly colored toy.
Her small hands pressed the red, yellow and blue buttons, and she smiled up at her mother, Nada Nouri.
“Reem is just the joy of the house,” Nada, of Jefferson City, said. “When you see Reem, you can tell that she has something wrong, but as soon as you talk to her, she has a smile that makes you connect with her.”
When she was born in Jefferson City, Reem suffered from heart problems. Doctors sent her to Cardinal Glennon Hospital in St. Louis, where she stayed for two weeks and was later diagnosed with trisomy 18, also known as Edwards Syndrome.
An extra chromosome on the 18th pair causes the life-threatening condition, which has mental and physical effects. The disorder affects one out of every 2,500 pregnancies in the U.S., according to the Trisomy 18 Foundation. Medical complications are common, and it can be fatal in the first months and years of a child’s life.
That was made known to Nada, who was told her daughter could die at any time. Doctors told the Nouris that their newborn girl may not make the trip from St. Louis back home to Jefferson City.
When they returned home, a hospice social worker assisted the family members in caring for Reem, whose heart was weak. She ate through a feeding tube, and continued to hang on.
The mother of four said she stopped thinking about the chance of her daughter dying and concentrated Reem’s future. Nada didn’t tell Reem’s siblings of the possibility their sister wouldn’t make it.
“I felt like that would be all their focus if I told them that she can go at any time, so I chose not to,” Nada said. “I said if it happens, it happens, and then we will deal with it.”
“She gave me hope by responding to all I was doing,” Nada said.
In March, Reem will celebrate her fifth birthday. She can sit on her own, play with her siblings, and is almost always smiling.
The Nouris attribute much of her success to a program called Capable Kids & Families, administered through the Special Learning Center.
The program, established by a mother in Rolla, connected Tami Kirchner, an experienced early childhood special education teacher, with Reem and Nada. Kirchner visits their home monthly and brings tools to help Reem continue to develop.
In addition to home visits, the Special Learning Center lends equipment and toys customized to meet the needs of children with physical and mental disabilities. There’s a room full of various toys in the Center, in which the therapists can pick out the items they think will benefit their patients the most.
There’s also a smaller closet of “switch toys” that are simpler and are specialized for therapy. Featuring buttons that cause lights or noises, they offer the sensory development that kids in the program benefit from most. These toys cost upwards of hundreds of dollars per piece, which isn’t feasible for the families in the program. The prices are expensive because they aren’t manufactured in mass amounts.
The toys are vital for the children, Kirchner said.
“Play is a child’s work,” Kirchner said. “Through play, a child is stimulating their brain, so that they can understand their environment and their bodies. We really focus on the sensory processing in the children.”
The center also offers events for program participants, allowing parents and children to connect with one another without judgment.
“We hope that we can empower families,” Kirchner said. “I hope that I can empower them so they don’t feel scared and know what to do with their children; to make them feel confident as parents.”
Since joining the Capable Kids and Families program, which is designed for children from birth to 6 years old, Kirchner said she’s found personal fulfillment through working with families like the Nouris. She connects families with resources, which can sometimes be food pantries and clothing, to improve their lives.
“It’s just being able to see the families that are struggling and see the smiles on their faces,” Kirchner said. “It’s about knowing that I can try to help and make their lives better.”
Nada said Kirchner gives her and Reem support through one-on-one time —playing with the young girl, listening to her mother’s concerns and laughing like close friends about humorous events happening in their everyday lives. Because of the Capable Kids and Families Program, Nada said she has more time to dedicate to Reem.
“I’m counting my blessings as we go,” she said.