Meet Nehemiah – Indiana

11-month-old Nehemiah is a “very happy baby”, his mom Nakisha says. He loves to watch Hey Bear Sensory and Gracie’s Corner on YouTube, and he loves listening to music and dancing.

Nehemiah was diagnosed with club feet as well as Down syndrome and heart conditions three weeks after he was born. It was suspected that he had these conditions when he was born, and later blood tests confirmed the diagnoses. “Early on there were challenges with him feeding because he had several holes in his heart; they were repaired, and he was slow to gain weight. But after his surgery everything has been wonderful”, Nakisha said.

Down syndrome is the result of a person being born with an extra chromosome, specifically chromosome 21. The extra copy of the chromosome affects how the baby’s brain and body develop.

While Nehemiah has Down syndrome, Nakisha feels lucky that he “doesn’t have most of the challenges that typical Down syndrome babies have”. According to cdc.gov, some of the more common issues children with Down syndrome face are hearing loss, obstructive sleep apnea, ear infections, eye diseases, and heart defects present at birth.

Nakisha learned about A Kid Again through a First Steps coordinator. Reading about other kids and their families on the website and hearing about their challenges and what they’re going through has been helpful. She and Nehemiah haven’t been to any events yet, in part because she felt he was still too small to be around large groups of people, however she plans to bring him to events next year when he’s bigger.

In regards to raising a child with an illness, Nakisha wants others to know that they’re just the same as “a ‘typical’ or ‘normal’ child, they still have all the same mannerisms and personalities, it’s just that they’re a little different; which every child is”.

December 2022