“ Never stop . I don ’ t care what people tell you , your children have a divine purpose just like everybody else . Your kids deserve the same quality of life as everybody else .”
— Nneka Gunn
RARE BUT WITH A DIVINE PURPOSE : THE GUNN FAMILY
RARE BUT WITH A DIVINE PURPOSE : THE GUNN FAMILY
Nneka Gunn was a stay-at-home mother to her son , N ’ nekia , when he was enrolled in a preschool program that supported him with language and learning interventions . Around the same time , N ’ nekia was diagnosed with scoliosis . Gunn looks back now on that time as the first indications of what was to come in her son ’ s life .
“ When you don ’ t fit a cookie-cutter mold in school , sometimes you are thrown into a huge basket of children who don ’ t fit that mold . Just thrown away ,” Gunn recalls . N ’ nekia began to experience disciplinary challenges in school , often placed in alternative school . “ They basically gave up on him ,” she says .
Feeling that all of N ’ nekia ’ s issues were dismissed as disciplinary issues rather than school administrators working to develop support strategies to address the developmental and cognitive concerns , Gunn began homeschooling her son . She felt alone and lacked support . At the same time , N ’ nekia was found to have heart abnormalities and kidney issues . He began taking growth hormones , and his scoliosis was worsening , with a severe curve in both the upper and lower spine . The complex spinal surgery could no longer be delayed .
The Gunns traveled to the University of Kentucky for surgery . It was both painful and complex , requiring doctors to rotate his rib cage , but he was six inches taller when they brought him out for recovery . The Gunns then moved to Alabama . Many people in N ’ nekia ’ s life would lend support and guidance , especially through community connections and extracurricular activities . “ I would have little nuggets or breadcrumbs placed along my path as a mother . That , and my own research , kept me fighting to give N ’ nekia the best resources possible ,” Gunn says . N ’ nekia recalls being lonely , not knowing how to talk to people so he was often mad . “ I felt like everybody was against me , but I was just being me , I guess ,” N ’ nekia says .
A friend in medical research at UAB recommended that N ’ nekia be evaluated by UAB Genetics , due to his multiple physical and developmental issues . Family conversations led Gunn to believe there was history of similar issues with some of N ’ nekia ’ s family members that warranted a genetics consult . After being evaluated by Anna Hurst , MD , MS , at the Genetics Clinic at Children ’ s of Alabama , N ’ nekia
N ’ nekia and Nneka Gunn
“ Never stop . I don ’ t care what people tell you , your children have a divine purpose just like everybody else . Your kids deserve the same quality of life as everybody else .”
— Nneka Gunn
and his mother consented to have whole genome sequencing through the Alabama Genomic Health Initiative .
N ’ nekia ’ s results from whole genome sequencing were initially negative for findings . However , researchers at HudsonAlpha Institute for Biotechnology submitted the gene ZMYM3 to GeneMatcher , an international database of genomic variants . Because the Gunn family consented for
12 Alabama Genomic Health Initiative Annual Report 2022