Cicily's Adventures

Friday, October 25, 2013

Cicily's sentence at school today. One of her friends wished to catch a ball. Breaks my heart.

3 comments:

Ondriawfd said...: Oh,...I love her.; October 27, 2013 at 10:18 PM
Camille Hammond said...: She is so smart! I'm so grateful for technology that makes kids like Cicily be able to communicate. She's so sweet.; October 28, 2013 at 9:22 PM
De Ette said...: I wish I could hear everything you would like to say!! I love you Cicily.; October 29, 2013 at 2:33 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.