Run With Liam
Liam's Story
Follow Liam and his family through milestones, funny moments, hard days, community support, and life with Kleefstra Syndrome.
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Liam Says...
Jun 30, 2019
3 years and 8 months
I am 3 years and 8 months my cousins come to play with me and see us for a few days. I love to have kids around but I hate I can’t communicate like they can and I don’t get to swim with them bc of my ear tubes. Mummy trying to find some ear plugs . I miss the pool. Baby Eve likes me and laughs at me. She loves my toys .
Jun 02, 2019
3 years and 7 months
I am 3 years and 7 months. My life is so crazy. School is coming to and end they say it makes me sad I love my friends. I made some neat things for mummy for Mother’s Day! I’m learning so much. I make my mummy smile and watch me all the time. I am able to climb on the bed now they are so surprised I can climb in the car and in my seat but those buckles are super confusing seriously think mummy and daddy struggle with them every time too so they can’t say anything.
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