Miriam & Mohammed 

Miriam and Mohammed are the first black children diagnosed with NGLY1, and Mohammed is the youngest ever. There are 30 known cases in the world. Symptoms include developmental delays, liver dysfunction, smaller head, diminished reflexes, seizures, and lack of tears—among others. The diagnoses for both of Amientabah’s children came in the same phone call, just days after Mohammed’s birth. 

People kept telling me, some kids are slower than the other kids. It will come. But I knew something was wrong with my child, and I sat down on the Internet late in the night doing research. What are you going to do if you have a child who’s slow and who is weak?

– Ami, Miriam and Mohammed’s mother