Beautiful Girl
I've heard from a bunch of people over the last few days that have read the blog and seen pictures of Cassandra about how beautiful Cassie was. They're right. She was beautiful. Absolutely positively beautiful.
She would have been even more beautiful today.
posted by Todd Akers @ 11:59 PM
2 comments
2 Comments:
It used to pain me when people would comment on how wonderful Cassie's eyes were.... Little did they know but her eyes were the first diagnosing characteristic of her rare genetic syndrome (and I hated to think about her being different from "normal" kids). Cassie had Kabuki Syndrome. Basically it is a collection of physical and medical conditions that are grouped under an unbrella. There isn't a test for it and people do not know what causes it. Some of the symptoms Cassie had were her large Almond shaped eyes, triangular nostrals, low muscle tone, immune system problems (she never met a virus she didn't like, sleeping with her eyes open (about 1/4 to 1/2 open.. very freaky), an extra "drop" of skin on her finger tips and toes, suck breath swallow coordination issues (she would aspirate her food when eating), very fair coloring. The syndrome was first described in the 1980's so until recently they thought there were less than 300 people in the world with it but since we joined the Kabuki Syndrome Network we have seen the number skyrocket.
I remember the day we took Lesley and Cassie to the geneticist. She came back after thinking about the girls with a book. She said Lesley has cerebral palsy but I think Cassie has this.... She laid a book down on the table and showed us a photo of two kids with Kabuki Syndrome. It was shocking to me... They looked like Cassie's cousins (if she had cousins). Todd totally didn't see it but I did. When I got on the yahoo group for parents of kids with KS and looked at the photos it was amazing how much they looked alike.
Todd has Cassie's eyes tattooed on his upper on as a memorial to Cassie. I love looking at them. I really miss those beautiful eyes.
hi think that it's great you are remembering the good old days with cassie.my little sister dyed one year after she was born but i still think of her like she was still here like you think of cassie.
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