Chamber Member of the Week: Melanin Children Matter
Lakeia Nard launched Melanin Children Matter in 2019 to raise awareness of rare childhood diseases, Autism, and other forms of neurodiversity. Nard’s initial objective was to fund research for SPTLC2, a rare gene that causes juvenile ALS and was attacking her son.
Nard’s son, King’Nazir, was only the second child ever to be diagnosed with SPTLC2 and the first boy. She said the progression was faster than she expected, and he passed away in 2023, just 2 years after obtaining their 5013C.
“I didn’t want his passing to be in vain,” Nard said. “It was a lonely journey with no resources other than, ‘Your child will pass, and you should spend time with him.’”
Nard said she continually advocates for equity and inclusion in the healthcare field and wants to expand the ALS registry. She also regularly assists families in applying for micro-grants to help offset the rising medication costs.
“I created this to help other families – to be that resource and fill that void because no one was there for me,” she said.
Nard added that Melanin Children Matter is currently searching for ways to work with the public school system to create “truly individualized IEP goals for neurodiverse children, especially those that slip through the cracks.”
She has also partnered with the Yale School of Medicine on a project with their Leith Lab and Dr. Timmothy Yu at Boston Children’s Hospital. On May 31, she will be in Washington, D.C., participating in a panel at the Institute of Museum and Library Services.
The organization has four primary pillars: service, education, healing, and research.
A statement on the organization’s website pays homage to King’Nazir and reads:
King’Nazir Gates, despite facing unimaginable challenges from a young age, embodied resilience, joy, and an unwavering spirit that inspired those around him. His journey, marked by misdiagnoses and the harsh reality of a rare and fatal disease, underscored the urgent need for support, awareness, and resources for children of color facing similar battles. King’Nazir’s infectious smile and indomitable courage in the face of adversity served as the catalyst for the creation of ‘Melanin Children Matter.’ His legacy of strength and perseverance guides our mission to advocate for marginalized communities, ensuring no child or family feels alone in their fight against pediatric illnesses. Through ‘Melanin Children Matter,’ we honor King’Nazir’s memory by amplifying the voices of those often overlooked and working tirelessly to create a world where every child, regardless of race or circumstance, receives the support and care they deserve.
“My youngest’s rare disease diagnosis fueled my passion for advocating for children’s health,” Nard said. “Through Melanin Children Matter, I provide support and education for families facing similar challenges, with my advocacy extending beyond the organization and shedding light on the unique obstacles melanin children face.”
By John Kirkpatrick The Owensboro Times