Hello. My name is Liam. I am nearly 3 years old and I live in Texas. My daddy is a fire fighter and paramedic with 2 fire departments. My mommy is an office manager and cleans houses after work. They both work very hard and very long hours to give me everything I need. I was born happy and healthy, but I’m behind on all of my milestones. Until recently we didn’t know why. After a lot of expensive tests the doctors say I have a very rare genetic disorder called Kleefstra Syndrome (KS). I am one of about 400 people diagnosed with KS in the entire world. I have a tiny piece of missing information near the end of one of my chromosomes which causes a lot of health problems. All kids with KS have learning delays and moderate to severe intellectual disabilities. I can’t 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 more than likely never be able to live on my own or be able to take care of myself. My family will always have to take care of me. Many kids with KS don't live past their teenage years. Most 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. I may learn now but could regress when I reach puberty. 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 a year or more behind, I still learn, but 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, but nothing is guaranteed. No matter what happens I know I will always be loved. K.I.D. IQ PROJECT is working hard to try and find a cure or help so the few of us in this world with Kleefstra will be able to lead normal lives. This is our hope for a future. Please help us to raise money to help them find a cure. This link helps to fund Kids IQ project https://www.kidsiqproject.org/. and they are the organization that has something that could change Liam's life as well as others that struggle with intellectual learning disabilities ... Your love and support is so appreciated!!!! Thank you all for your support. Liam, Chris and Michelle McDonald. For more information about Kleefstra Syndrome, please visit the links below.
https://www.kidsiqproject.org/
rarechromo.org
kleefstrasyndrome.org
findresources.co.uk
