Eden Elizabeth Carroll

Eden Elizabeth Carroll

5

12-2-03 ~ 7-19-09

CS Type 2
Age: 5.5 Years
Height: 34 inches
Weight: 22 pounds

I love to give babies hugs even though they hate it and scream.  My favorite activity is swimming and messing up my brother Gage’s train tracks. I can belly crawl around and can side sit. I want everything in my mouth but food so I got a feeding tube in my belly.  I still like to taste foods, but I don’t  want to swallow them. I really don’t like to sleep a lot so I am up ready to play with mommy and daddy at 3am. I love having physical, occupational, and speech therapy.  Make a wish gave me a play/therapy room in my basement so that I could have therapy come to house.  My room has a foam floor, platform swing, bean pit, work table, a huge mirror so I can see myself, a slide and a ball pit. I am a very happy little girl until you ignore me, then my temper comes out. I love lots of attention and want everyone I see to hold me.
Eden was diagnosed with CS at 2 years old. Her brother Ian passed away at r years of age, a year before she was born without a diagnosis. She saw so many Doctors and it only took a genetic opthamoligist at Johns Hopkins to diagnose her. She looked at Eden and said you have Cockayne Syndrome. Of course none of the other Doctors new exactly what Cockayne Syndrome was, so I went online and researched it and saw some photos of other CS kids and they looked a lot like her and Ian. They both had almost all the symptoms listed for CS kids. And that is how Eden got diagnosed.

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