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.
8 comments:
She did a great job! She is such a gem.
Thank you Renee.
hmmmm, what was she supposed to give a speech on? There has to be a topic. Seems like the teacher should have paid attention to the message your daughter was trying to give.
it could be on anything so hers was what eec is and how it affects her
Looks great. Very informative - I had no idea all the different issues it causes.
I visited your blog some times before but before noticed that your daughter had EEC ! I am a 18 year old girl living in Belgium, and I am affected by EEC too ! I fshe would like to have a penpal who is going through the same things as she is, I would be so happy to be her penpal ! :)
By the way, do you know the NFED (National Foundation for Ectodermal Dysplasias - www.nfed.org) ? It is a wonderful source of informations :)
Well, after telling us for ten years she had EEC syndrome, they are now saying she doesn't based on a genetic test. I don't know what to think. She has missing and had fused fingers and toes, cleft palate, cleft lip, club foot, webbed neck and a hole in her skull. It all fits the syndrome, but the test was negative. Strange.
Sorry, I only read your comment now... Yeah, I agree, this is strange... In most cases that I've heard of however, the person has a few permanent teeth, thin hair and a few sweat glands as part of the ectodermal dysplasia syndrome. Maybe it is because of this that she's not diagnosed with EEC syndrome ? Did the doctors give you any other possible syndromes that may be linked to her disabilities ? I hope you'll find out why it the test was negative soon ! :)
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