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...
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 .
Mar 03, 2019
3 years and 4 months
I am 3 years and 4 months my big sister got married!!!! I saw my other big sissy Kaytlynn and her new boyfriend Grizzly too. I now have a big brother and he is totally awesome he throws me in the air and plays with me all the time. He’s really great he makes me laugh plays hide and seek and chases me. My sister did good on this one. The wedding was outside at a really neat ranch it was awesome!!!
Feb 03, 2019
3 years and 3 months
I am 3 years and 3 months .... 2019 well I had to start it with a bang!!! A friend in my class was going to give me a hug and I lost my balance fell and hit my eye on the table and well that day ended in the ER .Mummy cleaned my face and the blood off my hands but I hated them touching my eye. They put lidocaine on it and we waited a very long time it seemed forever I just really wanted to be home. Watched loads of videos on daddy phone.
Dec 30, 2018