My brilliant, amazing, sweet, hilarious, courageous, most perfect baby boy was diagnosed with Alport Syndrome at four years old. To say we are devastated would be an understatement.

AS is an extremely rare genetic mutation. It means my son is missing an X chromosome, and this specific deletion causes deafness, blindness, kidney disease, and kidney failure. There's currently no cure for Alport Syndrome, only managing it.

It’s not if he gets sick, it’s when. Leo has been having blood and high protein levels in his urine for the last four months. That’s the number one symptom of AS, which is why we moved forward with genetic testing and how we found the deletion of the chromosome.

I also have a six-month-old. My car is currently broken down. We’re currently behind on our rent. Their dad is currently out of the picture and cannot help support us emotionally or financially. I’ve lost my job since learning of his diagnosis.

I'm asking for help to get my car back on the road, to get my son to VCU for a second opinion, and to be able to keep a roof over their heads until I learn how to navigate this.