King’nazir disease, Melanin Children Matter llc

My name is Lakeia Nard. king’nazir Gates my son, 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 devastated and 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 bringing awareness and researching sptlc2 gene mutation (under the pediatric als) as we work effortlessly with a promising biotech 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. Thank you for your time and patience, you can follow our story @

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