Cicily's Adventures

Tuesday, April 15, 2008

5 comments:

Katy said...: Oh that is precious!! What a good big sister, Cicily's big smile after the kiss was proof of that!!; April 15, 2008 at 10:53 PM
Ondriawfd said...: DARLING!!! What a treasure video.; April 16, 2008 at 12:07 AM
shannon said...: I don't think it can get any better than that. Too sweet! Isn't it fun having two girls!; April 17, 2008 at 8:35 PM
Kristy said...: Maya your song was so beautiful!! What a great big sister you are!; April 18, 2008 at 8:56 AM
Danielle said...: This is so cute!!! My, miss Maya has grown up so much!; April 18, 2008 at 7:12 PM

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.