My name is Liam. 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 300 known to have this condition in the US.

I am 10 years old and non-verbal, but with intensive speech therapy I have mastered several sounds and use an AAC (Augmentative Alternative Communication) device to speak for me. I can spell 30 or more words using my talker. I can write my name and “mom”. Occupational and physical therapy have taught me to undress 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 post go viral! Send it to every firefighter, police officer, and first responder you know, and ask them if they would please send me a department patch.

Lots of love,
Liam.

Run With Liam
PO BOX 261
Burns, TN 37029

#runwithliam
E-Mail: runwithliam@protonmail.com
www.runwithliam.org