About Me

Hello. My name is Liam. I am 8 years old and I live in Dickson, Tennessee with my mom and dad. We are about 30 minutes west of Nashville. We moved to Tennessee from Texas to find specialists who can help me learn to talk and take care of myself.

I was born happy and healthy, but fell behind on my milestones. They told me I was a year and a half behind, but we didn’t know why. After a lot of expensive tests, the doctors told me I have a very rare genetic disorder called Kleefstra Syndrome (KS). I am one of less than 500 people diagnosed with KS in the entire world. I have a tiny piece of information missing from the end of one of my chromosomes.

All kids with KS have moderate to severe intellectual disabilities. I haven’t learned to talk and with KS I might never be able to talk. It will always be harder for me to learn than other kids. I will probably never be able to live on my own or be able to take care of myself. I will always have to rely on my parents and my family to take care of me. They don't know how long somebody with KS can live, but many don't live past their teenage years. Most kids who have KS have low muscle tone, heart and kidney disorders as well as Autistic-like features. Other things I might have later in my life include seizures and structural brain abnormalities, sleep and behavioral difficulties and recurrent respiratory infections. My heart and kidney scans were normal, so the doctor says I am physically healthy as far as they can tell.

While I may be behind, I am still learning. I learn at my pace. I am a very happy and loving little boy. I love to smile and give everybody great big hugs. I love to run and play with my toys, but I have trouble telling people what I need and want. I don't know how to play with other kids because I don’t know how to respond to social cues. With a lot of occupational and speech therapy I might learn to speak and play like other kids, but nothing is guaranteed. No matter what happens I know I will always be loved.