Adnan is a wonderful boy who loves climbing, singing, and playing with his younger sister. He is also severely affected by DLG4 SHINE, a disorder caused by a mutation in a gene called DLG4, that has left him without the ability to learn in the same way that a typical child would learn. He is unable to communicate verbally and can become overwhelmed by sensory input and the unpredictable environment around him. Despite these differences, Adnan is so happy and loving, that his smiles, hugs, and beautiful singing voice bring joy to everyone that meets him.

In 2014, Adnan was born premature and spent 3 months in the neonatal intensive care unit. He spent years working hard to learn how to eat, walk, and talk with the help of many pediatric rehabilitation specialists in PT, OT, ST, feeding therapy, and ABA therapy. Initially, it was thought his significant developmental delay was caused by prematurity. However, he had a remarkable ability to read (called hyperlexia) before the age of 2 that we later learned was highly suggestive of autism that was caused by something other than prematurity.
At the age of 4, he regressed and lost all of his verbal communication.

In 2022, by sheer luck Adnan had a new DNA test that found the cause of his autism. Adnan’s neurologist told us a paper was published just the year before that linked a mutation in the DLG4 gene to autism, epilepsy, and intellectual disability. She told us that there are no known curative treatments but that someday Gene Therapy could cure it. However, the burden is on parents with children affected by this disorder to seek out researchers worldwide to develop treatments and to raise money to fund the development of the medication and the clinical trials that are needed to safely administer the medication.