About Us
My name is Lakeia Nard. king’nazir Gates, who name means one who over comes in victory is 6 years old. At the age of 3 after 4 misdiagnosis he was diagnosed with a rare disease called SPTLC2 under the pediatric ALS umbrella. After receiving a whole genome sequence testing, we were flown out to the National Institution of Health in Maryland. The NIH confirmed that SPTLC2 was the cause of his disease and there has only been one other child, a girl diagnosed with this fatal disease. Told me that there was no other research and to enjoy him, his time is limited on earth. I was devasted, alone with no resources, outlets or support. That is when Melanin Children Matter was born.
Melanin children matter we are servicing children, healing families and educating society, while enhancing awareness surrounding childhood rare disease SPTLC2 (pediatric ALS) and autism. Advocating for the lives our are children, caregivers and providers, while providing resources and outlets to bring together all melanin children and families. You are not alone! If I can not save my son, I am praying I save someone else’s child.
All funds will be put into bring awareness and researching sptlc2 gene mutation (under the pediatric als) as we work effortlessly with a promising bio tech company to create a treatment and/or cure. All other funds will be put towards small grants for families to gain access to communication devices and whole genome sequence testing to minimize misdiagnosis.
Mayor Watson proclaimed February 28th as Rare Disease Day in Owensboro in honor of 7-year-old King’nazir Gates, who passed away on the 28th after a long battle with an extremely rare disease called SPTLC 2/Pediatric ALS. Lakeia Nard, King’nazir’s mother, accepted the proclamation.
“King’nazir’s name means ‘one who overcomes in victory’ and in his honor, Melanin Children Matter Inc, a nonprofit organization, will carry on his legacy on serving the childhood rare disease and autistic community,” Nard said after accepting the proclamation. “I promise to work effortlessly finding resources and advocating with results. Our children will forever overcome a victory.”
Our Story
Melanin Children Matter Inc. was founded by Lakeia Nard, a mother of five, who turned her family’s struggle with SPTLC2-associated pediatric ALS into a powerful force for change. When her son, King’nazir Gates, was diagnosed with this rare and devastating condition, Lakeia found herself facing a journey that she never imagined. However, she turned her experience into an opportunity to help others who are going through similar experiences.
Lakeia’s vision for Melanin Children Matter is to create a world where every child, no matter the rarity of their condition, has a chance to thrive. Since its founding, the organization has been dedicated to raising awareness, providing support for families, and funding research into SPTLC2-associated pediatric ALS and related conditions.
Our Impact
At Melanin Children Matter, we are proud of the impact that we have made so far. We have funded research into SPTLC2-associated pediatric ALS and related conditions, provided resources and support for families in need, and raised awareness about rare diseases. Our work has touched the lives of many, and we are committed to continuing our efforts until we create a world where every child has a chance to thrive.
Join Our Mission
At Melanin Children Matter, we are proud of the impact that we have made so far. We have funded research into SPTLC2-associated pediatric ALS and related conditions, provided resources and support for families in need, and raised awareness about rare diseases. Our work has touched the lives of many, and we are committed to continuing our efforts until we create a world where every child has a chance to thrive.