Welcome to Melanin Children Matter Inc.
United for a brighter future: Servicing children, healing families, and educating society while enhancing awareness surrounding childhood rare diseases and resources for autism.
You can help lots of people
by donating little
Melanin Children Matter Inc. is a non-profit organization dedicated to raising awareness and providing support for children with SPTLC2-associated pediatric ALS (Amyotrophic Lateral Sclerosis) and their families. Our mission is to create a world where every child, no matter the rarity of their condition, has a chance to thrive.
The Impact of Rare Diseases
Rare diseases may not be well-known, but their collective impact is significant. Individually, these conditions may affect a small number of people, but together, they touch the lives of millions. Our mission at Melanin Children Matter Inc. is to make a difference for those who need it most, ensuring that every child has the opportunity to thrive.
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SPTLC2-Associated Pediatric ALS: A Rare and Devastating Condition
How We Help
Together, we can unlock the mysteries of rare diseases and create a brighter future for children with autism.
Your support can change lives.
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Our Founder’s Story
My name is Lakeia Nard, originally from Illinois, but I’ve called Kentucky home for the past 16 years. I am a proud mother to five wonderful children, with King’nazir Gates being my youngest. After an arduous journey involving three misdiagnoses and consultations with over 21 doctors, King’nazir was finally diagnosed with SPTLC2 at the age of 3, a condition that falls under the Pediatric ALS umbrella.
King’nazir was the second child ever discovered and the first boy diagnosed with this exceedingly rare disease. SPTLC2/Pediatric ALS is so uncommon that, to date, only six families worldwide have received a diagnosis. When faced with a rare disease that has limited research available, your heart shatters, your mind races, and you’re left feeling utterly lost. I remember the despair I felt when I couldn’t find any answers or a community to support us. We were told to simply go home and enjoy our son, as his life would be tragically short.
Determined to prevent others from experiencing the same overwhelming sense of loneliness and helplessness, I founded Melanin Children Matter.