Julie Allen and Tyler McAdams 

Podcast Episode Show Notes

Episode Name

Allen Family Story


Julie Allen

This is a wonderful opportunity to be able to share the story that I have been blessed to have with my grandson, Tyler. Tyler has always been in my life, ever since he was born. It’s funny, though, because I don’t remember a whole lot prior to his diagnosis, but when he was four, my husband and I suspected that something was happening with him and we didn’t know what it was. So, we ended up taking him to a neurologist in New Mexico. She thought there was something there, but she didn’t know what it was. She referred us to the local university, and unfortunately, that took eight months to get in to see them. So, at that time, my husband and I begged our son and daughter-in-law if we could at least get custody, temporary custody of Tyler, just to get him on the insurance and get him the medical services that he needed. And so, in April of 2008, we were granted custody. And in July 2008, we were given a diagnosis. 


About the Disease

Metachromatic Leukodystrophy (MLD) is one of many diseases in a disease family called Leukodystrophies. Learn more about Leukodystrophies here.

Learn more about MLD here.