Monthly Archives: June 2023

The author, whose son was diagnosed with Rett syndrome at age 6, is frustrated with the dismissive sentence often included in articles about the disorder that states males with Rett syndrome rarely survive infancy. While it is true that many boys with Rett syndrome do not survive infancy, the author has encountered families of over 80 boys and young men diagnosed with Rett syndrome, of which 29 have passed away in the last six years, all of whom lived beyond infancy. The author argues that this incomplete understanding of the disorder can cause delays in diagnosis and appropriate care for those who do survive infancy. However, there are signs of progress, such as upcoming clinical trials that will include males with Rett syndrome and the establishment of a research fund for males with Rett syndrome. The author hopes that every child born with Rett syndrome will have timely access to diagnosis and appropriate care. Continue reading →