Cicily's Adventures: November 2012

Sunday, November 11, 2012

6 year old portraits

Cicily turned 6 on October 3 this year. These are her new, updated 6 year old portraits. We had to take them on 2 different days as Mom had to learn a few camera tricks, thus the wardrobe change. Love how all-around beautiful Cicily is.

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.