Hi! My name is Liam and I'm 10 years old. I live in Dickson, TN and I have Kleefstra Syndrome. KS is a rare genetic condition characterized by intellectual disability, childhood hypotonia, severe expressive speech delay, and a distinctive facial appearance with a spectrum of additional clinical features. I am one of less than 500 known to have this condition in the US and one of 5 in the state of TN.

I am 10 years old and non-verbal, but with intensive speech therapy I have mastered many sounds and use an AAC (Augmentative Alternative Communication) device to speak for me. I can spell 100 or more words using my talker. I can write just about anything you ask me to. Occupational and physical therapy have taught me to dress myself and I am learning to feed myself, but there are so many things other kids do that I can’t. I love to learn and continue to amaze everybody with what I learn to do. Every little step is a huge deal for me.

So how can you help?

I love Santa, Buc-ee's, fire trucks, and police cars. I enjoy visiting the fire station and hanging out with the firefighters. I collect fire, police, and EMS patches from places we visit, but I would like to expand my collection.

Please help us spread the word about Kleefstra syndrome by making this go viral! Share this on your social media. Send it to every firefighter, police officer, and first responder you know, and ask them if they would please send me a department patch. My daddy is a 20-year union firefighter.

Lots of love,

Liam.

Run With Liam
PO BOX 261
Burns, TN 37029