Two days after it was due, I found out Jasmine was supposed to write and give a speech. She had part of one written but it was in the neverlands of her school desk. So we wrote one about having EEC Syndrome that evening.
This is Jasmine's speech:
I was born with EEC syndrome, and I am going to tell you what the syndrome is and what it is like living with it.
EEC stands for Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome. It is caused by an abnormal p63 gene on the 19th chromosome. One in 90,000 babies are born with EEC syndrome. Some things a person born with EEC syndrome may have are missing teeth, hair and nails, missing or fused fingers and toes, cleft palate and lip, and no sweat glands. That means that when they get too hot, they don't sweat. They have to spray themselves with cold water to cool down if they play sports. My teeth, hair and sweat glands are normal.
Kids with EEC have many surgeries and are in the hospital many times. When I was born in Valdosta, Georgia the doctors had me sent to Shands Hospital in Gainesville, Florida to make sure my organs were okay. They were okay, but I was diagnosed with EEC Syndrome. My first surgery was to repair my cleft lip when I was 3 months old. Then they repaired my cleft palate. It had to have a second repair and I had a hole in my skull fixed too. Later I had my hands, feet and clubfoot operated on. After that they fixed my lip and nose again, and my neck twice.
The worst thing about all the surgeries is missing out on fun like PE class, soccer and softball. I don't like breathing in the gas mask that puts me to sleep. It is also painful right after a surgery. There are also some things surgery can't fix. Surgery can't give me my missing fingers or toes or it can't give people hair or teeth or sweat glands.
The worse thing about EEC syndrome is feeling different. Some times people stare and or say I'm funny looking. It is worse for the kids with no hair or teeth. We may look different, but we are just normal people inside. We have feelings and talents and abilities like anyone else.
Jasmine practiced the speech from the paper many times the evening before she gave it at school, but did not do well at all trying to give it from notes on 3 x 5 cards. And the teacher said this is a report, not a speech. What is the difference? I don't think I ever gave a speech until high school, and they were basically the same as oral reports.