Howdy! My name is Luke. I am four year-old who lives in Texas. I have Aicardi-Goutieres Syndrome (Type 1, Trex 1 mutation) but I don't let that stop me from living and loving life.
The way I have fun looks different from other kids because I can't sit up, walk, talk, or use my hands, but really, I like the same things most three year olds like. I like cartoons- Foghorn Leghorn is my favorite. I like funny sounds and toys that light up. Most of all, I like my friends at school. Yup! That's right! I go to school!
My mom says we have to take care of my health, so aside from my pediatrician, I have many specialists. Other people with AGS should consider having these specialists as well, because they make life a little easier: neurologist, physical medicine doctor, gastroenterologist (I have a g-tube), opthamologist (I have glaucoma and have had several surgeries to correct that), and last but not least, a pulmonologist. I see the majority of my specialists at Texas Children's Hospital (TCH) in Houston, TX. Although I do not live in Houston, TCH is such a reputable place that we don't mind the drive. Ok, well sometimes I do- I'm not a huge fan of long car rides.
I attend physical, occupational, and speech therapies. Two of my favorite gadgets are my respiratory vest and suction machine. My mom says they are "must haves" for anyone who has AGS. That's because I get congested easily and it helps me breathe easier.
Like I said before, my life looks different from most kids, but that doesn't mean it's less or insignificant. In fact, I've heard that I'm extra special! I love, I am loved, and I'm incredibly unique. My name is Luke and it's nice to meet you!