LuLu's P-MS Conference Trip

My name is Alexis Grace Minor. Better known as "LuLu". How did I get such a silly nickname? My Dane Dane (Dana Parker) called me that as a baby and it stuck. Everyone says I'm special and they spoil me. I guess I am since I have a rare disorder that only about 600 in the world have. Yep lucky me. How did that happen? Well when I was a baby I was really weak. So my mom took me to the docotor all the time. She finally found a doctor that would listen, Dr Ashley Evans. She sent me for lots of different testing. At 7 months my mom recieved a phone call that changed our lives. She was told to go see a geneticist. Off to UAB we went and it was a sad day lots of crying. My parents were told that I have a rare syndrome called 22q13 deletion syndrome or now known as Phelan McDermid Syndrome. A mouthful I know. It's just a fancy way of saying I am missing a tiny piece of my 22nd chromosome. I am unable to walk because my muscles are so weak and I have really poor coordination. I have a pink wheelchair that everyone loves to push me around in. My wheels even light up. I did have seizures and trouble eating but both have improved. I make noises but no words come out. I express myself by laughing and crying. My momma asks me all the time to say " momma". I try really hard but I just smile at her instead. I have a huge undying love for spongebob. I cry when my tv is off. My tv goes everywhere I go except for school. Sometimes my teacher lets me watch a lil spongebob if I get upset. If you would like to learn more just ask my momma or visit www.22q13.org