Run With Liam
Liam's Story
Follow Liam and his family through milestones, funny moments, hard days, community support, and life with Kleefstra Syndrome.
Rare Ministry
Run With Liam Rare Ministry Inc.
Visit the ministry website to learn more about awareness, support, and ways to run with Liam’s rare journey.
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Monthly updates
May 03, 2019
3 years and 6 months
I am 3 years and 6 months I am doing better at potty training I love to flush for sure. I am loving building with my blocks more i get as high as I can with out it falling down and then I smash it down and start over. I want to smash it though. If it falls it kind of makes me mad and off to building again so I can knock it down.
Apr 14, 2019
Liam Says - April 2019
We got up and loaded our car up and headed out. Daddy used google maps so we got a neat detour of the city and I don’t say detour lightly we detoured a lot of times apparently mummy said google must have missed the memo of all the road construction and road closures in Philadelphia. We finally made it down town we were going to hibachi but the place was closed and well I wanted to eat hibachi and wasn’t too happy to have to get back into my detour car seat again! But back I went and I made it impossible to buckle and mummy knows how to fix it but ugh! Then I kicked my shoes off and decided to take my socks off well they wouldn’t come off and that made me mad!!!
Apr 10, 2019
What is Kleefstra Syndrome?
According to the National Institutes of Health, Kleefstra syndrome (KS) is a genetic disorder characterized by intellectual disability, childhood hypotonia, severe expressive speech delay and a distinctive facial appearance with a spectrum of additional clinical features.
Mar 30, 2019
3 years and 5 months
I am 3 years and 5 months . I have had an ear infection for a long time apparently my ears aren’t supposed to feel like this. I never complained just figured it was Normal. So mummy took me to have them rechecked and they were still infected so now we are going to the hospital for them to do something to make them better there was another doctor that said I was losing my hearing. Daddy thought it was selective hearing mummy was worried bc I wouldn’t go for my favorite movies and sounds .