Samantha Null, age 14 months, of Troy, is the daughter of Danielle and Aaron Null. Samantha’s parents learned at a 20-week ultrasound she had Apert syndrome, also known as acrocephalosyndactyly, which is a genetic disorder that causes fusion of the skull, hands, and feet bones.

After being born, Samantha was in the NICU at Dayton Children’s Hospital for 3 weeks. Danielle explains that every case of Apert syndrome is unique. Samantha was born with her skull bones fused, a cleft palate, and toes and fingers that are webbed. She has undergone a few surgeries already and has more planned.

Danielle explains that Riverside’s Early Intervention services have been a big help. Samantha’s development is delayed about 4-5 months compared to her peers. With help from physical therapist Karen Lohnes, Samantha has started sitting and is now working to transition from sitting to crawling.

Danielle said that Karen has also been helping Samantha with her neck range, picking things up, and making choices.

“Home visits are a major lifesaver. The thing I love about Karen coming to the house is that she shows me what things to use in my house to help Samantha. It’s not like being at an office where there are steps and tables we can’t practice with at home. They help you use what you have,” Danielle said.

Despite her challenges, Danielle says Samantha is always smiling and laughing.

“She’s inspired me with everything she’s gone through. She just lights up the room, smiling and waving. She is also very independent and wants to do things on her own, and likes being with her two older sisters. She is just the happiest baby ever,” Danielle said.

Samantha loves Mickey and Minnie, playing peek-a-boo, and anything that lights up and plays music. She likes to listen to the radio.

“Music is my therapy,” Danielle said. “I think it might be hers, too.”