Our incredible (and third!) son, Barrett, was born on January 26, 2021. The first year of his life was spent in and out hospitals and doctors appointments, as we tried to put a name to some of the developmental issues he was experiencing - low muscle tone, feeding difficulties, and respiratory insufficiency, to list a few.

On January 13, 2022, we received Barrett’s diagnosis through a test called Whole Exome Sequencing: Rett Syndrome. Barrett’s doctors were puzzled and so were we. Until recently, Rett Syndrome was thought to occur exclusively in females; males were thought to be unable to survive gestation and, if they did, would certainly not survive past infancy. Yet, here was our beautiful baby boy, with a confirmed MECP2 mutation, facing many of the same struggles a female with Rett would face.

Through social media, we were fortunate to find and connect with parents in similar situations. We’ve met dozens of parents of boys with Rett and together, we’re on a mission to tell the world about our boys and to fight for their access to genetic and pharmaceutical medicines that will change their lives.

Barrett is now 5 years old, and he faces challenges every single day that many people would consider insurmountable. Barrett receives all of his nutrition through a g-tube, he relies on a ventilator to help him breathe, and he struggles with seizures. Yet, Barrett hasn’t given up, and neither have we.

Through our fundraising efforts, our goal is to push curative research forward and to ensure such research aids the male Rett population, along with their female counterparts.